WorldWideScience

Sample records for acute palliative care

  1. Integrating palliative care within acute stroke services: developing a programme theory of patient and family needs, preferences and staff perspectives

    Directory of Open Access Journals (Sweden)

    Burton Christopher R

    2012-11-01

    Full Text Available Abstract Background Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care. Methods Data from a survey (n=191 of patient-reported palliative care needs and interviews (n=53 exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences. Results The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity, and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying through which staff integrate palliative and stroke care. A range of clinical (whether patients are being ‘actively treated’, and prognostic uncertainty and service (leadership, specialty status and neurological focus factors appear to influence how palliative care needs are attended to. Conclusions Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families.

  2. Oncology and palliative care

    OpenAIRE

    Bausewein, Claudia; Hartenstein, R.

    2000-01-01

    Oncology developed as a discipline over the last decades. Treatment is concentrated on cure or palliation of the illness with the help of chemotherapy, radiotherapy or surgery. Palliative care has its origin in the hospice movement that started around 1960 in the UK. Centre of care is the patient and his family. Focus of care has moved from quantity to quality of life. Symptom control, communication, rehabilitation and care for the dying are main areas of palliative care. Palliative care and ...

  3. Management of levofloxacin induced anaphylaxis and acute delirium in a palliative care setting

    Directory of Open Access Journals (Sweden)

    Arunangshu Ghoshal

    2015-01-01

    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.

  4. High Burden of Palliative Needs among Older Intensive Care Unit Survivors Transferred to Post–Acute Care Facilities. A Single-Center Study

    OpenAIRE

    Baldwin, Matthew R.; Wunsch, Hannah; Reyfman, Paul A.; Narain, Wazim R.; Blinderman, Craig D.; Schluger, Neil W; Reid, M Cary; Maurer, Mathew S.; Goldstein, Nathan; Lederer, David J; Bach, Peter

    2013-01-01

    Rationale: Adults with chronic critical illness (tracheostomy after ≥ 10 d of mechanical ventilation) have a high burden of palliative needs, but little is known about the actual use and potential need of palliative care services for the larger population of older intensive care unit (ICU) survivors discharged to post–acute care facilities.

  5. Management of ramsay hunt syndrome in an acute palliative care setting

    Directory of Open Access Journals (Sweden)

    Shrenik Ostwal

    2015-01-01

    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.

  6. Collaboration between physicians and a hospital-based palliative care team in a general acute-care hospital in Japan

    Directory of Open Access Journals (Sweden)

    Nishikitani Mariko

    2010-06-01

    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.

  7. Pediatric Palliative Care

    OpenAIRE

    Johnston, Donna L.; Hentz, Tracy A.; Friedman, Debra L.

    2005-01-01

    Pediatric palliative care provides benefit to children living with life-threatening or terminal conditions. Palliative care should be available to all seriously ill children. Palliative care includes the treatment of symptoms such as pain, nausea, dyspnea, constipation, anorexia, and sialorrhea. This care can occur in a variety of settings, from home to hospice to hospital, and must include bereavement care and follow up after the death of a child. There are many challenges in pediatric palli...

  8. Management of hemichorea hemiballismus syndrome in an acute palliative care setting

    Directory of Open Access Journals (Sweden)

    Anuja Damani

    2015-01-01

    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.

  9. Palliative Care

    Science.gov (United States)

    ... Diseases & Conditions Pregnancy & Baby Nutrition & Fitness Emotions & Behavior School & Family Life First Aid & Safety Doctors & Hospitals Q&A ... assess the complex needs of the patient and family, facilitate communication with the care team and within the family, ...

  10. Pediatric palliative care.

    Science.gov (United States)

    Moody, Karen; Siegel, Linda; Scharbach, Kathryn; Cunningham, Leslie; Cantor, Rabbi Mollie

    2011-06-01

    Progress in pediatric palliative care has gained momentum, but there remain significant barriers to the appropriate provision of palliative care to ill and dying children, including the lack of properly trained health care professionals, resources to finance such care, and scientific research, as well as a continued cultural denial of death in children. This article reviews the epidemiology of pediatric palliative care, special communication concerns, decision making, ethical and legal considerations, symptom assessment and management, psychosocial issues, provision of care across settings, end-of-life care, and bereavement. Educational and supportive resources for health care practitioners and families, respectively, are included. PMID:21628042

  11. Education in palliative care.

    Science.gov (United States)

    Weissman, David E; Blust, Linda

    2005-02-01

    Palliative care education includes the domains of pain and nonpain symptom management, communications skills, ethics and law, psychosocial care, and health systems. Defining key attitudes, knowledge, and skill objectives, and matching these to appropriate learning formats, is essential in educational planning. Abundant educational resource material is available to support classroom and experiential palliative care training. PMID:15639043

  12. Adjusting Bowel Regimens When Prescribing Opioids in Women Receiving Palliative Care in the Acute Care Setting.

    Science.gov (United States)

    Gonzales, Lucia K; Delmastro, Margaret A; Boyd, Denise M; Sterling, Melvyn L; Aube, Patricia A; Le, Rosemary N; Traucht, Lisa; Quinal, Leonida R; Georges, Jane M; Glaser, Dale N

    2016-08-01

    In palliative medicine, constipation is the third most common symptom after pain and anorexia, causing some patients to discontinue opioid therapy. Women experience higher incidence of constipation than men. The prevalence of infrequent bowel movements (<3 times/wk) and adherence to an established bowel regimen among women receiving opioids were studied. Referral to the palliative care team decreased the prevalence of infrequent bowel movements from 72% to 45%, and algorithm adherence increased from 38% to 78%. Education of oncology nurses decreased the prevalence of infrequent bowel movements among patients with cancer from 71% to 60%, and algorithm adherence increased from 0% to 10%. Patients benefit from stool softeners and stimulants when receiving opioids. PMID:25964648

  13. Palliative care - managing pain

    Science.gov (United States)

    End of life - pain management; Hospice - pain management ... or if you have side effects from your pain treatments. ... Bookbinder M, McHugh ME. Symptom management in palliative care and ... Medicine . 1st ed. Philadelphia, PA: Elsevier Saunders; 2008:chap ...

  14. [Palliative care in neurology].

    Science.gov (United States)

    Provinciali, Leandro; Tarquini, Daniela; De Falco, Fabrizio A; Carlini, Giulia; Zappia, Mario; Toni, Danilo

    2015-07-01

    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. PMID:26228722

  15. Pediatric palliative care

    Directory of Open Access Journals (Sweden)

    Trapanotto Manuela

    2008-12-01

    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.

  16. Center to Advance Palliative Care

    Science.gov (United States)

    ... Discussion Forum The IPAL Project Palliative Care Leadership Centers (PCLC) Member Resources National Seminar Quick Links Certification ... a Job Manage Job Posts About About The Center to Advance Palliative Care (CAPC) is a national ...

  17. Improving Palliative Cancer Care

    OpenAIRE

    Del Ferraro, Catherine; Ferrell, Betty; Van Zyl, Carin; Freeman, Bonnie; Klein, Linda

    2014-01-01

    Over a decade ago, the Institute of Medicine (IOM) presented Ensuring Quality Cancer Care in the United States, with recommendations for change (IOM, 1999). However, barriers to integrating palliative care (PC) to achieve high-quality care in cancer still remain. As novel therapeutic agents evolve, patients are living longer, and advanced cancer is now considered a chronic illness. In addition to complex symptom concerns, patients and family caregivers are burdened with psychological, social,...

  18. Pediatric palliative care

    OpenAIRE

    Trapanotto Manuela; Spizzichino Marco; Benini Franca; Ferrante Anna

    2008-01-01

    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 pedi...

  19. Palliative care and spirituality

    Directory of Open Access Journals (Sweden)

    Narayanasamy Aru

    2007-01-01

    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.

  20. Inter-Professional Palliative Care

    DEFF Research Database (Denmark)

    Madsen, Kirsten Halskov; Henriksen, Jette; Meldgaard, Anette

    2013-01-01

    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....

  1. The palliative care clinical nurse consultant: an essential link.

    Science.gov (United States)

    O'Connor, Margaret; Chapman, Ysanne

    2008-01-01

    This study describes the role of acute hospital palliative care nurse consultants and makes recommendations about future directions for the role development of this role. While the palliative care nurse consultant role is accepted in the acute setting there is little evidence or literature about what contributes to the success of this role. A three-phase study was undertaken to describe the role of palliative care nurse consultants in acute hospitals in Melbourne, Australia. The first phase of the three-phase study, involving in-depth qualitative interviews with the palliative care nurse consultants, is reported in this article. Using open-ended semi-structured questions, 10 palliative care nurse consultants were interviewed using open-ended questions about aspects of their role and the interviews were thematically analysed. Four main themes were identified that clarified the role; being the internal link; being the lynch pin; being responsive and being challenged. The palliative care nurse consultants were the first point of introduction to palliative care and thus they saw a significant role in introducing the concept of palliative care to those requiring palliative care, their families and others. They are an important link between the settings of care required by people accessing palliative care-acute, in-patient palliative care and community care. The palliative care nurse consultants saw themselves in leadership positions that in some ways defy boundaries, because of the inherent complexity and diversity of the role. The palliative care nurse consultants' role appears to be pivotal in providing expert advice to staff and people requiring palliative care, and connecting palliative care services both within the hospital and to external services. PMID:19112925

  2. Pediatric Palliative Care at a Glance

    Science.gov (United States)

    ® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...

  3. Improving Palliative Cancer Care.

    Science.gov (United States)

    Del Ferraro, Catherine; Ferrell, Betty; Van Zyl, Carin; Freeman, Bonnie; Klein, Linda

    2014-01-01

    Over a decade ago, the Institute of Medicine (IOM) presented Ensuring Quality Cancer Care in the United States, with recommendations for change (IOM, 1999). However, barriers to integrating palliative care (PC) to achieve high-quality care in cancer still remain. As novel therapeutic agents evolve, patients are living longer, and advanced cancer is now considered a chronic illness. In addition to complex symptom concerns, patients and family caregivers are burdened with psychological, social, and spiritual distress. Furthermore, data show that PC continues to be underutilized and inaccessible, and current innovative models of integrating PC into standard cancer care lack uniformity. The aim of this article is to address the existing barriers in implementing PC into our cancer care delivery system and discuss how the oncology advanced practice nurse plays an essential role in providing high-quality cancer care. We also review the IOM recommendations; highlight the work done by the National Consensus Project in promoting quality PC; and discuss a National Cancer Institute-funded program project currently conducted at a National Comprehensive Cancer Center, "Palliative Care for Quality of Life and Symptoms Concerns in Lung Cancer," which serves as a model to promote high-quality care for patients and their families. PMID:26114013

  4. Generalist palliative care in hospital

    DEFF Research Database (Denmark)

    Bergenholtz, Heidi; Jarlbæk, Lene; Hølge-Hazelton, Bibi

    2016-01-01

    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: a...... 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...

  5. How to plan research in palliative care

    Directory of Open Access Journals (Sweden)

    Santosh K Chaturvedi

    2011-01-01

    Full Text Available Research in palliative care has its challenges. However, research in different aspects of palliative care is important. This paper gives simple methods of planning and conducting a research in the area of palliative care in India.

  6. What is Pediatric Palliative Care?

    Science.gov (United States)

    ... communication and coordination of care. With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire ...

  7. Team networking in palliative care.

    Science.gov (United States)

    Spruyt, Odette

    2011-01-01

    "If you want to travel quickly, go alone. But if you want to travel far, you must go together". African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361

  8. Team networking in palliative care

    Directory of Open Access Journals (Sweden)

    Odette Spruyt

    2011-01-01

    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.

  9. What is the Nature of Palliative Care for Patients Dying from Heart Failure on Acute Hospital Wards? A Critical Review.

    OpenAIRE

    Helme, Laura

    2008-01-01

    A critical review was conducted with an aim to explore the nature of palliative care for patients dying from heart failure. A thorough search of healthcare databases, specific journals and relevant websites produced the literature that provided the basis for this review. All literature was critically appraised and categorised into chapter topics. Key components of palliative care are providing pain relief, symptom control, holistic care and improving or maintaining a patient's quality of...

  10. Palliative Care and Death Anxiety

    OpenAIRE

    İnci, Figen; Öz, Fatma

    2012-01-01

    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 ...

  11. Palliative Care and Death Anxiety

    OpenAIRE

    Figen Inci; Fatma Oz

    2012-01-01

    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 dy...

  12. Integrating palliative care into comprehensive cancer care.

    Science.gov (United States)

    Abrahm, Janet L

    2012-10-01

    While there are operational, financial, and workforce barriers to integrating oncology with palliative care, part of the problem lies in ourselves, not in our systems. First, there is oncologists' "learned helplessness" from years of practice without effective medications to manage symptoms or training in how to handle the tough communication challenges every oncologist faces. Unless they and the fellows they train have had the opportunity to work with a palliative care team, they are unlikely to be fully aware of what palliative care has to offer to their patients at the time of diagnosis, during active therapy, or after developing advanced disease, or may believe that, "I already do that." The second barrier to better integration is the compassion fatigue many oncologists develop from caring for so many years for patients who, despite the oncologists' best efforts, suffer and die. The cumulative grief oncologists experience may go unnamed and unacknowledged, contributing to this compassion fatigue and burnout, both of which inhibit the integration of oncology and palliative care. Solutions include training fellows and practicing oncologists in palliative care skills (eg, in symptom management, psychological disorders, communication), preventing and treating compassion fatigue, and enhancing collaboration with palliative care specialists in caring for patients with refractory distress at any stage of disease. As more oncologists develop these skills, process their grief, and recognize the breadth of additional expertise offered by their palliative care colleagues, palliative care will become integrated into comprehensive cancer care. PMID:23054873

  13. Palliative care guidelines in oncology

    International Nuclear Information System (INIS)

    Palliative care has its roots in hospice movement arising in the 1970s in Europe and later also in America. From its beginning it has had connection with patients in terminal phase of cancer disease who suffered from many serious symptoms. Nowadays palliative care is also being provided to patients in terminal phase of certain neurological disorders, AIDS, exceptionally for patients with heart, lung or kidney failure. It has become part of modern medicine and of good clinical practice. (author)

  14. Rawlsian Justice and Palliative Care

    DEFF Research Database (Denmark)

    Knight, Carl; Albertsen, Andreas

    2015-01-01

    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....

  15. [Xerostomia in palliative care].

    Science.gov (United States)

    Feio, Madalena; Sapeta, Paula

    2005-01-01

    Xerostomia is the subjective feeling of mouth dryness, caused or not by function lowering of salivary glands, with decrease of saliva quality or quantity. It's a frequent symptom in palliative care patients and its prevalence is referred to be 60% to 88% in advanced and progressive oncological disease patients. Xerostomia has physical, social and psychological consequences. Saliva plays an important role in maintaining the best physiological conditions of mouth. Besides humidifying the oral cavity tissues, its lubricating properties help swallowing, talking and prevents other damages caused by mechanical and noxious microbiological agents. Xerostomia is caused by three basic mechanisms: factors that compromise the salivary centre, factors related to the autonomic stimulation or factors related to salivary glands themselves. The diagnosis is mainly clinical. Mouth condition must be thoroughly evaluated. If justified, a quantitative evaluation of saliva secretion, in rest and under stimulation, might be done. The treatment must be oriented by aetiology and directed towards the disease effects in patient comfort and quality of life. During treatment, the use of xerogenic drugs should be controlled, hydration should be promoted and other symptom control measures improved. The symptomatic treatment has three pathways: the increasing of saliva production by mechanical, gustatory or pharmacological stimulation; the using of saliva substitutes and the improving of active mouth care. Mechanical stimulation is obtained by chewing gum and gustatory stimulation may be reached by sucking Vitamin C tablets. Pilocarpine is the available drug to improve salivation. A soft diet must be advised, hard and dry food, tobacco and alcoholic beverages should be avoided. It's important that health workers teach patients with xerostomia the best way to get relief and the measures to prevent its complications that could, even more, compromise their quality of life. PMID:16684486

  16. Team Networking in Palliative Care

    OpenAIRE

    Odette Spruyt

    2011-01-01

    "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 f...

  17. Palliative care in advanced dementia.

    Science.gov (United States)

    Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth

    2014-08-01

    Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. PMID:25037291

  18. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 240 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  19. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 228 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  20. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 245 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  1. Palliative Care: What You Should Know

    Science.gov (United States)

    ... Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a ... help you. 3 ? Ask for it! Tell your doctors, nurses, family and caregivers that you want palliative care. ...

  2. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 224 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  3. Pediatric Palliative Care: A Personal Story

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  20. Palliative Care in Lung Cancer.

    Science.gov (United States)

    Shinde, Arvind M; Dashti, Azadeh

    2016-01-01

    Lung cancer is the most common cancer worldwide and is the leading cause of cancer death for both men and women in the USA. Symptom burden in patients with advanced lung cancer is very high and has a negative impact on their quality of life (QOL). Palliative care with its focus on the management of symptoms and addressing physical, psychosocial, spiritual, and existential suffering, as well as medically appropriate goal setting and open communication with patients and families, significantly adds to the quality of care received by advanced lung cancer patients. The Provisional Clinical Opinion (PCO) of American Society of Clinical Oncology (ASCO) as well as the National Cancer Care Network's (NCCN) clinical practice guidelines recommends early integration of palliative care into routine cancer care. In this chapter, we will provide an overview of palliative care in lung cancer and will examine the evidence and recommendations with regard to a comprehensive and interdisciplinary approach to symptom management, as well as discussions of goals of care, advance care planning, and care preferences. PMID:27535397

  1. Terminal care in older patients in hospital: development of a quality indicator set and its first application in a retrospective comparison of patients treated in acute geriatric unit and a palliative care unit of a Belgian university hospital

    OpenAIRE

    Cools, Annelies; Vaneechoutte, Delphine; Van Den Noortgate, Nele; VERSLUYS, KAREN; De Laat, Martine; Petrovic, Mirko; Piers, Ruth

    2015-01-01

    Background: Care at the end-of-life of geriatric inpatients is of increasing importance. Nevertheless, limited research has been conducted on this subject so far. Objectives: To compose a set of quality indicators (QIs) which measure the quality of terminal care for geriatric inpatients and to compare the quality of end-of-life care between the Acute Geriatric Unit (AGU) and the Palliative Care Unit (PCU). Design: Retrospective case study. Setting: Belgian university hospital. Par...

  2. Palliative Care: A Holistic Discipline.

    Science.gov (United States)

    Greer, Steven; Joseph, Marie

    2016-03-01

    Although mind and body are inextricably interwoven, psychological factors have received insufficient attention within medicine. The biomedical model though necessary is not sufficient. In medicine and particularly in palliative care, a holistic biopsychosocial approach is required. A number of examples from clinical practice in a hospice setting are presented. PMID:26631259

  3. Palliative Care and Death Anxiety

    Directory of Open Access Journals (Sweden)

    Figen Inci

    2012-06-01

    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.

  4. [Malignant wounds in palliative care].

    Science.gov (United States)

    Fromantin, Isabelle; Rollot, Florence; Nicodeme, Marguerite; Kriegel, Iréne

    2015-01-01

    In the alsence of effective cancer treatment, malignant wounds evolve. The decisions taken by the multi-disciplinary team with regard to their care vary depending on whether the patient is in the initial, advanced or terminal phase of palliative care. Modern dressings can be used to control bleeding, odours and drainage. The aim is to control the symptoms and improve the quality of life, until its end. PMID:26027186

  5. Palliative Care in Cancer

    Science.gov (United States)

    ... care that is given to a person when cancer therapies are no longer controlling the disease. It focuses on caring, not curing. When a person has a terminal diagnosis (usually defined as having a life expectancy ...

  6. Palliative Care Doula: an innovative model.

    Science.gov (United States)

    Lentz, Judy C

    2014-01-01

    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. PMID:25296488

  7. The management of family conflict in palliative care

    OpenAIRE

    LICHTENTHAL, WENDY G.; Kissane, David W.

    2008-01-01

    We review the literature on family conflict in palliative care. The prevalence and common sources of conflict are discussed, including historical issues of tension, differing coping styles, the division of labour, and the presence of acute or chronic mental illness within the family. Assessment and intervention strategies used in Family Focused Grief Therapy (FFGT), a family-centred preventive intervention that begins during palliative care and continues during bereavement, are presented, wit...

  8. Palliative Care in Musculoskeletal Oncology.

    Science.gov (United States)

    Gulia, Ashish; Byregowda, Suman; Panda, Pankaj Kumar

    2016-01-01

    Patients in advanced stages of illness trajectories with local and widespread musculoskeletal incurable malignancies, either treatment naive or having recurrence are referred to the palliative care clinic to relieve various disease-related symptoms and to improve the quality of life. Palliative care is a specialized medicine that offers treatment to the disease-specific symptoms, places emphasis on the psychosocial and spiritual aspects of life and help the patients and their family to cope with advance stage cancer in a stronger and reasonable way. The overall outcome of musculoskeletal malignancies has improved with the advent of multidisciplinary management. Even then these tumors do relapse and leads to organ failures and disease-specific deaths in children and young adults in productive age group thus requiring an integrated approach to improve the supportive/palliative care needs in end-stage disease. In this article, we would like to discuss the spectrum of presentation of advanced musculoskeletal malignancies, skeletal metastasis, and their management. PMID:27559251

  9. Improving palliative care.

    LENUS (Irish Health Repository)

    Moran, Sue

    2009-05-01

    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.

  10. Radiation therapy in palliative care

    International Nuclear Information System (INIS)

    Radiation therapy is a valuable treatment for palliation of local symptoms with consistently high response rates in the relief and control of bone pain, neurological symptom, obstructive symptoms, and tumor hemorrhage. Over than 80% of patients who developed bone metastasis and superior vena cava syndrome obtained symptom relief by radiation therapy. Radiation therapy is also well established as an effective treatment for brain metastasis, improving symptoms and preventing progressive neurological deficits, and recently stereotactic irradiation had became a alternative treatment of surgery for small metastatic brain tumors. Both radiation therapy and surgery are effective in the initial treatment of malignant spinal cord compression syndrome, and no advantages of surgery over radiation therapy has been demonstrated in published series when patients have a previously conformed diagnosis of malignant disease and no evidence of vertebral collapse. The outcome of treatment depends primarily upon the speed of diagnosis and neurological status at initiation of treatment. It is very important to start radiation therapy before patient become non-ambulant. Low irradiation dose and short treatment period of palliative radiation therapy can minimize disruption and acute morbidity for the patients with advanced cancer with enabling control of symptoms and palliative radiation therapy is applicable to the patient even in poor general condition. (author)

  11. Turkish healthcare professionals' views on palliative care.

    Science.gov (United States)

    Turgay, Gulay; Kav, Sultan

    2012-01-01

    The concept of modern palliative care has been disseminating slowly in Turkey and has recently been included in the National Cancer Control Program. The aim of this study was to explore healthcare professionals' knowledge and views of palliative care. It was conducted at three hospitals with a sample of 369 healthcare professionals working in adult clinics. Data were collected via open-ended questions and 16 statements from healthcare professionals on their views of palliative care. Most respondents stated that there was a lack of in-service/continuing education in palliative care, and more than half said they had not received any education in palliative care. A majority stated that the meaning and goal of palliative care is "improving the quality of life of a patient who is in the terminal stage." Lack of awareness of palliative care and a lack of educational resources in that field are the most frequently reported barriers to the development of palliative care in Turkey. Palliative care should be included in curricula for healthcare professionals and in-service education programs should be established. PMID:23413762

  12. Edmonton Regional Palliative Care Program: impact on patterns of terminal cancer care

    OpenAIRE

    Bruera, E; Neumann, C M; Gagnon, B.; Brenneis, C; Kneisler, P; Selmser, P; J Hanson

    1999-01-01

    The Edmonton Regional Palliative Care Program was established in July 1995 to measure the access of patients with terminal cancer to palliative care services, decrease the number of cancer-related deaths in acute care facilities and increase the participation of family physicians in the care of terminally ill patients. In this retrospective study the authors compared the pattern of care and site of deaths before establishment of the program (1992/93) and during its second year of operation (1...

  13. Palliative Care Consultation Service and Palliative Care Unit: Why Do We Need Both?

    OpenAIRE

    Gaertner, Jan; Frechen, Sebastian, 1982-; Sladek, Markus; Ostgathe, Christoph; Voltz, Raymond

    2012-01-01

    Patients treated in a palliative care unit were compared with those treated by a palliative care consultation service at the same center. The coexistence of the two institutions at one hospital contributed to the goal of ensuring optimal palliative care for patients in complex and challenging clinical situations.

  14. Palliative dental care- a boon for debilitating.

    Science.gov (United States)

    Mulk, Bhavana Sujana; Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar

    2014-06-01

    World Health Organization defines "palliative care" as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enlightens the importance of dentist role in palliative team. PMID:25121074

  15. Current trends in palliative heart care.

    Science.gov (United States)

    Shi, Rongyun

    2016-02-01

    Palliative care is an alternate therapeutic approach that involves specialised medical care of a patient diagnosed with serious life threatening illness like heart failure (HF). The prime aim of the palliative care is to provide patient with relief from the symptoms, pain, physical stress, and mental stress of the diagnosed disease. The palliative care helps in improving the quality of life for both the patient and the family. Advanced HF is a disease process that carries a high burden of symptoms, suffering, and death. Palliative care can complement traditional care to improve symptom amelioration, patient-caregiver communication, emotional support, and medical decision making. The present review summarized all the available on alternative palliative approaches provided to heart patient by a team of physicians, nurses and other healthcare professionals. PMID:25926080

  16. Pediatric Palliative Care: A Personal Story

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  17. Pediatric Palliative Care: A Personal Story

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  18. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 15,536 views 5:39 Emily's story - ... 4:17. batsonhospital 1,946 views 4:17 Right to Relief: Palliative Care in India - Duration: 3: ...

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  20. Pediatric Palliative Care: A Personal Story

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  1. Palliative care and elderly health in Brazil

    Directory of Open Access Journals (Sweden)

    Angela Maria Amaral Soares Abou Ali

    2011-09-01

    Full Text Available In recent years elderly population is increasing substantially, about 650,000 per year, as well as the concept of unifamílies, ie, families consisting of a single person. In this paper, is proposed a reflection about health of elderly in Brazil, and the conditions of a chronic disease and its acute state - terminal. In the actual society, capitalist and capitalized, the individual is valued by his production, losing his value when acquires a disabling illnesses. There is a growing need for work, and each time there is less time and resources to manage the permanence of an elderly patient at home, or pay for a caregiver. This situation leads families to resort to hospitalization, which in turn makes the hospitals overcrowded with patients in this state, affecting both emergency care as the treatment of chronic patients. This fact occurs due to lack of hospital infrastructure, as well by the lack of units of the healthy system capable of providing palliative care. The questioning about the elderly who need palliative care, and reflection about the type of care dispended for this kind of patient, should be the focal point of professional's reflections, capable to lead him to a new way of thinking and, consequently, to inspire him to act in a new way.

  2. Attitudes of Nonpalliative Care Nurses towards Palliative Care

    OpenAIRE

    Victoria Tait; Megan Higgs; Linda Magann; Joanne Dixon; Jan Maree Davis; Ritin Fernandez

    2015-01-01

    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 (FAT...

  3. Diagnostic radiology in paediatric palliative care

    International Nuclear Information System (INIS)

    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.)

  4. Diagnostic radiology in paediatric palliative care

    Energy Technology Data Exchange (ETDEWEB)

    Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran [Great Ormond Street Hospital, Radiology Department, London (United Kingdom)

    2014-01-15

    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.)

  5. THE CZECH PUBLIC VIEW OF PALLIATIVE CARE

    Directory of Open Access Journals (Sweden)

    Macková Marie

    2014-05-01

    Full Text Available The topic of palliative care is not yet in the Czech Republic sufficiently discussed. The research try to attempt to identify current levels of awareness of palliative care within the Czech population. The research was carried out through a postal survey. 2 000 individuals in Czech were identified at random from the phone book. To ensure geographical representation stratified random sampling was used. In total, 785 responses were received. The research aimed to identify what are the current levels of knowledge of palliative care and what factors contribute to this knowledge. It also asked a number of additional questions relating to who respondents think should receive paliative care, what they think palliative care should consist of, when they would want information on palliative care and whether respondents feel that in the Czech society there is sufficient discussion of issues surrounding death and dying. Overall the majority of respondents reported some knowledge of palliative care, with under a third reporting no knowledge. Only a very small number of respondents reported a high level of knowledge of palliative care. The vast majority of respondents feel that palliative care should be offered to all those who have terminal illnesses. The majority of respondents cited pain relief as important in end of life care with many stating this as their first, most important service. The second most common service requested for end of life care was family support, including respite services, support services and someone for family to talk to. Respect or dignity were also commonly cited. More than half of respondents stating that we do not discuss death and dying enough. Although not a representative study, the survey findings confirm many of existing views and policies within palliative care and point to possible directions and challenges for future development.

  6. Parenting and palliative care in paediatric oncology

    NARCIS (Netherlands)

    Kars, M.C.

    2012-01-01

    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

  7. Palliative care reimagined: a needed shift.

    Science.gov (United States)

    Abel, Julian; Kellehear, Allan

    2016-03-01

    Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers-an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care. PMID:26832803

  8. Palliative Care in Rural Minnesota: Findings from Stratis Health's Minnesota Rural Palliative Care Initiative.

    Science.gov (United States)

    McKinley, Deb; Shearer, Janelle; Weng, Karla

    2016-01-01

    Palliative care, which involves managing symptoms, controlling pain and addressing stress caused by a chronic or terminal illness, has been shown to keep patients out of the hospital and allow them to stay home and live more comfortably with their illness. Typically, it is provided by an interdisciplinary team led by a physician trained in palliative medicine. Rural areas have not always had access to such specialists. Yet, today, rural health care organizations are finding ways to create palliative care programs that meet the needs of their chronically ill and aging populations. This article describes a six-year initiative led by Stratis Health to advance palliative care in rural Minnesota. It highlights the work of FirstLight Health System in Mora and describes Stratis Health's Rural Palliative Care Measurement Pilot Project, an effort to develop and test measures for evaluating rural palliative care programs. PMID:26897897

  9. Palliative Care for Extremely Premature Infants and Their Families

    Science.gov (United States)

    Boss, Renee D.

    2010-01-01

    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…

  10. Pediatric Palliative Care: A Personal Story

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  11. The Island Hospice model of palliative care

    Science.gov (United States)

    Khumalo, Thembelihle; Maasdorp, Valerie

    2016-01-01

    There has been a substantial increase in cancer detections in Africa over years, and it has also been noted that higher number of individuals are affected by the later stages of cancer that lead to death. When it comes to cancer care, Zimbabwe is no exception with its ongoing palliative care related research, though still in its infancy. The need for advanced and more accessible palliative care to assist the vulnerable has been intensified by this increase in cancer prevalence. Island Hospice, which is a centre of excellence in palliative care has varying elements of the models that it employs to engage those most in need of palliative assistance, especially children and financially-challenged individuals.

  12. Pediatric Palliative Care: A Personal Story

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  17. Pediatric Palliative Care: A Personal Story

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  18. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... of Rachel—a pediatric neuroblastoma patient—and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category Science & Technology License Standard ...

  19. Pediatric Palliative Care: A Personal Story

    Science.gov (United States)

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  1. Pediatric Palliative Care: A Personal Story

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  3. Palliative Dental Care- A Boon for Debilitating

    OpenAIRE

    Mulk, Bhavana Sujana; Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar

    2014-01-01

    World Health Organization defines “palliative care” as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enligh...

  4. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... NEOMED) 15,536 views 5:39 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 52,107 views 13:34 A Certain Kind Of Death - Documentary - Duration: 1:09:38. havoctrend 4,265,977 views 1:09:38 ... LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before Death 9,986 ...

  5. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 1,185 views 1:05:13 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 43,618 views 13:34 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 572,031 views 7:46 Faces Of Palliative Care - Duration: 45:21. PHCMediaServices 47,505 views 45: ...

  6. Parental concerns in children requiring palliative care

    OpenAIRE

    Manjiri Dighe; Sunita Jadhav; Mary Ann Muckaden; Anuradha Sovani

    2008-01-01

    Children with advanced, life-limiting illness have unique needs which are different from those of adults. Pediatric palliative care is an under developed specialty. Aims : To identify concerns of parents of children with advanced, incurable cancers, and to elicit their attitudes toward revealing the diagnosis and prognosis to the sick child. Method : This study was carried out in a large tertiary cancer center in India. Parents of 20 pediatric palliative care patients attending the ou...

  7. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Fair 575,791 views 7:46 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 44,293 views 13:34 A Certain Kind Of Death - Documentary - Duration: 1:09:38. havoctrend 4,029,578 views 1:09:38 Understanding Palliative Care - Duration: 31:23. Gavin Grubb 16,092 views ...

  8. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Reserve 5,654 views 12:07 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 45,108 views 13:34 End of Life | Aging Matters | NPT Reports - Duration: 59:01. NPT Reports 44,760 views 59:01 ... 7:46 Principles of Pediatric Palliative Care - Duration: 1:05:13. Karen Fauman 1,199 ...

  9. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Reserve 5,654 views 12:07 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 45,108 views 13:34 End of Life | Aging Matters | NPT Reports - Duration: 59:01. NPT Reports 44,760 views 59:01 ... 7:46 Principles of Pediatric Palliative Care - Duration: 1:05:13. Karen Fauman 1,200 ...

  10. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... NEOMED) 15,234 views 5:39 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 50,432 views 13:34 A Certain Kind Of Death - Documentary - Duration: 1:09:38. havoctrend 4,213,979 views ... Principles of Pediatric Palliative Care - Duration: 1:05:13. Karen Fauman 1,257 ...

  11. Kampo medicine for palliative care in Japan

    OpenAIRE

    Okumi, Hirokuni; Koyama, Atsuko

    2014-01-01

    Kampo medicines are currently manufactured under strict quality controls. The Ministry of Health, Labour and Welfare of Japan has approved 148 Kampo formulas. There is increasing evidence for the efficacy of Kampo medicines, and some are used clinically for palliative care in Japan. The specific aim of this review is to evaluate the clinical use of Kampo medicines in palliative care in the treatment of cancer. The conclusions are as follows: Juzentaihoto inhibits the progression of liver tumo...

  12. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Reserve 5,654 views 12:07 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 45,108 views 13:34 End of Life | Aging Matters | NPT Reports - Duration: 59:01. NPT Reports 45,182 views 59:01 ... LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before Death 9,509 ...

  13. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Fair 585,155 views 7:46 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 46,153 views 13:34 The Last ... Young Adult Cancer Program - Duration: 11:08. UCLA Health 180,287 views ... 58:22 The Human Connection of Palliative Care: Ten Steps for What To Say and Do - ...

  14. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Fair 616,862 views 7:46 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 50,610 views 13:34 A Certain Kind Of Death - Documentary - Duration: 1:09:38. havoctrend 4,218,518 views ... 59:01 The Human Connection of Palliative Care: Ten Steps for What To Say and Do - ...

  15. Pediatric Palliative Care in the Intensive Care Unit.

    Science.gov (United States)

    Madden, Kevin; Wolfe, Joanne; Collura, Christopher

    2015-09-01

    The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make prognostication extremely difficult. The uncertainty of prognostication and the available medical technologies make both the neonatal intensive care unit and the pediatric intensive care unit locations where many children will receive Pediatric Palliative Care. Health care providers in the neonatal intensive care unit and pediatric intensive care unit should integrate fundamental Pediatric Palliative Care principles into their everyday practice. PMID:26333755

  16. Palliative care in patients with heart failure.

    Science.gov (United States)

    McIlvennan, Colleen K; Allen, Larry A

    2016-01-01

    Despite advances in cardiac therapy, heart failure (HF) remains a progressive, highly symptomatic, and deadly disease that places great demands on patients, caregivers, and healthcare systems. Palliative care is a multidisciplinary approach to care that focuses on communication, shared decision making, and advance care planning; provides relief from pain and other distressing symptoms; integrates psychological and spiritual aspects of care; and offers a support system to help families cope during illness and bereavement. Palliative care has applications across the stages of heart failure, including early in the course of illness, often in conjunction with other therapies that are intended to prolong life. However, the incorporation of palliative care into the management of heart failure has been suboptimal for several reasons: uncertainty in the disease trajectory, failure to reward communication between healthcare providers and patients, siloed care, lack of knowledge, overlay of comorbidity and frailty, life saving devices with complex trade-offs, and a limited evidence base. This review will summarize the current literature on the emerging role of palliative care in patients with heart failure and the challenges and opportunities for its integration into routine care. It will discuss current initiatives and future directions of the collaborative relationship between the palliative care and heart failure disciplines. PMID:27079896

  17. The management of family conflict in palliative care.

    Science.gov (United States)

    Lichtenthal, Wendy G; Kissane, David W

    2008-02-01

    We review the literature on family conflict in palliative care. The prevalence and common sources of conflict are discussed, including historical issues of tension, differing coping styles, the division of labour, and the presence of acute or chronic mental illness within the family. Assessment and intervention strategies used in Family Focused Grief Therapy (FFGT), a family-centred preventive intervention that begins during palliative care and continues during bereavement, are presented, with special consideration given to research on treatment decision-making, cultural issues, special-needs populations, and the management of crises within the family. We conclude with a discussion of challenges that frequently impede conflict resolution and with suggestions for addressing these difficulties in the palliative care setting. PMID:24027358

  18. Pulmonary medicine and palliative care.

    Science.gov (United States)

    Tucakovic, M; Bascom, R; Bascom, P B

    2001-04-01

    Gynaecological malignancies affect the respiratory system both directly and indirectly. Malignant pleural effusion is a poor prognostic factor: management options include repeated thoracentesis, chemical pleurodesis, symptomatic relief of dyspnoea with oxygen and morphine, and external drainage. Parenchymal metastases are typically multifocal and respond to chemotherapy, with a limited role for pulmonary metastatectomy. Pulmonary tumour embolism is frequently associated with lymphangitic carcinomatosis, and is most common in choriocarcinoma. Thromboembolic disease, associated with the hypercoagulable state of cancer, is treated with anticoagulation. Inferior vena cava filter placement is indicated when anticoagulation cannot be given, or when emboli recur despite adequate anticoagulation. Palliative care has a major role for respiratory symptoms of gynaecological malignancies. Treatable causes of dyspnoea include bronchospasm, fluid overload and retained secretions. Opiates are effective at relieving dyspnoea associated with effusions, metatases, and lymphangitic tumour spread. Non-pharmacological therapies include energy conservation, home redesign, and dyspnoea relief strategies, including pursed lip breathing, relaxation, oxygen, circulation of air with a fan, and attention to spiritual suffering. Identification and treatment of gastroesophageal reflux, sinusitis, and asthma can improve many patients' coughs. Chest wall pain responds to local radiotherapy, nerve blocks or systemic analgesia. Case examples illustrate ways to address quality of life issues. PMID:11358403

  19. Integrating palliative care into the trajectory of cancer care.

    Science.gov (United States)

    Hui, David; Bruera, Eduardo

    2016-03-01

    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. PMID:26598947

  20. Compassion fatigue in pediatric palliative care providers.

    Science.gov (United States)

    Rourke, Mary T

    2007-10-01

    The experience of compassion fatigue is an expected and common response to the professional task of routinely caring for children at the end of life. Symptoms of compassion fatigue often mimic trauma reactions. Implementing strategies that span personal, professional, and organizational domains can help protect health care providers from the damaging effects of compassion fatigue. Providing pediatric palliative care within a constructive and supportive team can help caregivers deal with the relational challenges of compassion fatigue. Finally, any consideration of the toll of providing pediatric palliative care must be balanced with a consideration of the parallel experience of compassion satisfaction. PMID:17933615

  1. Palliative care: Progress, needs, and challenges

    Directory of Open Access Journals (Sweden)

    Cassileth Barrie R

    2012-02-01

    Full Text Available Abstract Palliative care is increasingly available and the importance of its role increasingly recognized. International work toward making palliative care a basic human right underscores the growing need to ensure comfort and pain relief for the terminally ill. The organizational structures in place for providing such care vary greatly within and across countries; even definition of the term is not uniform. The World Health Organization (WHO definition includes the statement that palliative care "... intends neither to hasten nor postpone death...", thus illustrating varying socio-cultural perceptions. In addition to cultural differences, other challenges include clinical, economic, and varying institutionalized systems and practices in patient care. This is a commentary on http://www.ijhpr.org/content/1/1/9/

  2. Policy analysis: palliative care in Ireland.

    LENUS (Irish Health Repository)

    Larkin, P

    2014-03-01

    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.

  3. Palliative care in home care: perceptions of occupational therapists

    Directory of Open Access Journals (Sweden)

    Séfora Gomez Portela

    2015-03-01

    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.

  4. Meaning and Practice of Palliative Care for Hospitalized Older Adults with Life Limiting Illnesses

    OpenAIRE

    Bethel Ann Powers; Norton, Sally A.; Schmitt, Madeline H.; Quill, Timothy E.; Maureen Metzger

    2011-01-01

    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 identi...

  5. [Legal basics in palliative care].

    Science.gov (United States)

    Putz, Wolfgang

    2016-03-01

    The German legal framework concerning end of life decisions is based on two pillars: the medical standards and the patient's autonomy. Every medical treatment, including life-saving and palliative measures, requires medical indication and, crucially, the patient's consent. Without the patient's consent even medically indicated treatment is prohibited.In other cases, complying with the patient's wishes, doctors have to treat symptoms the best they can. This includes palliative sedation accepting that the indicated medication may shorten life.It is prohibited to actively kill a patient to shorten his suffering. Assisting a suicide is only permitted if the suicide decision is made freely and on the patient's own responsibility. Businesslike suicide assistance is prohibited. PMID:26983108

  6. Palliative care provision for patients with chronic obstructive pulmonary disease

    Directory of Open Access Journals (Sweden)

    Yohannes Abebaw

    2007-04-01

    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

  7. Using Skype to support palliative care surveillance.

    Science.gov (United States)

    Jones, Jacqueline

    2014-02-01

    The aim of this article is to demonstrate how a novel yet important tool can facilitate family involvement in person-centred care, despite geographical distance. The author presents a case study as an in-depth example of the use of Skype in the context of palliative care at home. Skype enhanced family surveillance and symptom management, augmented shared decision making, provided a space for virtual bedside vigil, and ultimately provided the rapport necessary for optimal end of life care. PMID:24471549

  8. Parental concerns in children requiring palliative care

    Directory of Open Access Journals (Sweden)

    Manjiri Dighe

    2008-01-01

    Full Text Available Children with advanced, life-limiting illness have unique needs which are different from those of adults. Pediatric palliative care is an under developed specialty. Aims : To identify concerns of parents of children with advanced, incurable cancers, and to elicit their attitudes toward revealing the diagnosis and prognosis to the sick child. Method : This study was carried out in a large tertiary cancer center in India. Parents of 20 pediatric palliative care patients attending the outpatient department were interviewed and emerging themes identified. Results : Parents showed varying degrees of anticipatory grief. Most families were financially strained. Most parents were reluctant to discuss disease and dying with the child. Siblings were rarely told or directly involved in care. There was resistance to allowing the palliative care team to communicate with the patient. Patients did not receive any formal support. Parents identified family and neighbors as the main sources of support. Conclusions : Parental attitudes hinder open communication with dying children in India. There is a need for research to explore the concerns of families of children with fatal illness. Specialist training is required for professionals working in pediatric palliative care to address this issue.

  9. Operationalizing reflexivity to improve the rigor of palliative care research.

    Science.gov (United States)

    Johnston, Bridget; Pringle, Jan; Buchanan, Deans

    2016-08-01

    Reflective practice involves deliberate consideration of actions, attitudes and behaviors. Reflexivity in research is considered important for ensuring that research is ethically and rigorously conducted. This paper details the challenges of conducting research involving patients with palliative care needs within the acute hospital environment. It discusses the contribution of reflexivity to a pilot study using the Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" as a brief intervention to foster a more person-centered climate. Challenges that emerged are discussed from the perspectives of the researchers, the participants, and the setting; they relate to: timing and recruitment, the nature of palliative care illness, attitudes to research, and the research environment. Awareness of such issues can prompt researchers to devise appropriate strategies and approaches that may inform and assist the rigor and conduct of future research. PMID:26620579

  10. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... NPT Reports 43,088 views 59:01 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 571, ... 54:51 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  11. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Health - Meriter 49,205 views 13:34 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 606, ... 05:13 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  12. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 21. PHCMediaServices 46,965 views 45:21 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 570, ... 09:38 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  13. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... patient's and family's experience with illness. Category Science & Technology License Standard YouTube License Show more Show less ... views 1:09:38 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. ...

  14. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 327,928 views 56:49 Dr. Patti Brennan: Nursing, Big Data, & the NIH BD2K Initiative - Duration: 58:22. NINRnews 752 views 58:22 Portraits of Life, Love & Legacy Through Pediatric Palliative Care - Duration: 54:51. WesternReservePBS 2,974 views 54: ...

  15. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Fauman 1,271 views 1:05:13 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 622, ... 3:02 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  16. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Young Adult Cancer Program - Duration: 11:08. UCLA Health 191,156 views 11:08 A Day in the Life - Lauren (Nurse Practitioner- Palliative Care) - Duration: 2:56. JNJDiscoverNursing 8,458 views 2: ...

  17. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Medway CCG 99,206 views 27:40 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 576, ... 5:39 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  18. In palliative cancer care symptoms mean everything

    NARCIS (Netherlands)

    Teunissen, S.C.C.M.

    2007-01-01

    The thesis aims to provide deeper insight into symptoms of cancer patients in palliative care, in order to improve the adequacy of decision-making for optimizing symptom control. Several aspects of symptoms and symptom management were investigated as were some aspects of communication and consultati

  19. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 43,618 views 13:34 Portraits of Life, Love & Legacy Through Pediatric Palliative Care - Duration: 54:51. WesternReservePBS 2,763 views 54: ...

  20. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... in to report inappropriate content. Sign in Transcript 3,398 views Like this video? Sign in to ... Through Pediatric Palliative Care - Duration: 54:51. WesternReservePBS 3,095 views 54:51 Teen Cancer Stories | UCLA ...

  1. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... NPT Reports 44,760 views 59:01 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 580, ... 58:22 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  2. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... a patient's and family's experience with illness. Category Science & Technology License Standard YouTube License Show more Show ... 993 views 10:35 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. ...

  3. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Before Death 9,901 views 5:27 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 617, ... 09:38 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  4. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Medway CCG 99,206 views 27:40 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 575, ... 13:30 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  5. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Quality Palliative & End of Life Care in Canada (English subtitles/captions) - Duration: 16:53. palliummja 39,413 ... 16:53 Loading more suggestions... Show more Language: English Country: Worldwide Restricted Mode: Off History Help Loading... ...

  6. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 4,244,244 views 1:09:38 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 621, ... 3:02 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  7. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... NPT Reports 44,760 views 59:01 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 579, ... 5:53 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  8. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Before Death 9,793 views 5:27 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 608, ... 31:23 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  9. A test instrument for palliative care.

    NARCIS (Netherlands)

    Adriaansen, M.J.M.; Achterberg, T. van

    2004-01-01

    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

  10. Palliative care teams: effective through moral reflection.

    NARCIS (Netherlands)

    Hermsen, M.A.; Have, H.A.M.J. ten

    2005-01-01

    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

  11. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Medway CCG 110,583 views 27:40 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 618, ... 31:23 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  12. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... Fauman 1,210 views 1:05:13 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 584, ... 2:29 Pediatric Palliative Care: helping children with cancer survive and thrive - Duration: 3:29. American Cancer ...

  13. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... 505 views 45:21 A Certain Kind Of Death - Documentary - Duration: 1:09:38. havoctrend 4,026, ... Grubb 15,851 views 31:23 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. LIFE Before ...

  14. Kenya Hospices and Palliative Care Association: integrating palliative care in public hospitals in Kenya

    Science.gov (United States)

    Ali, Zipporah

    2016-01-01

    Background In Kenya, cancers as a disease group rank third as a cause of death after infectious and cardiovascular diseases. It is estimated that the annual incidence of cancer is about 37,000 new cases with an annual mortality of 28,000 cases (Kenya National Cancer Control Strategy 2010). The incidence of non-communicable diseases accounts for more than 50% of total hospital admissions and over 55% of hospital deaths (Kenya National Strategy for the Prevention and Control of Non Communicable Diseases 2015–2020). The prevalence of HIV is 6.8 (KIAS 2014). Most of these patients will benefit from palliative care services, hence the need to integrate palliative care services in the public healthcare system. Method The process of integrating palliative care in public hospitals involved advocacy both at the national level and at the institutional level, training of healthcare professionals, and setting up services within the hospitals that we worked with. Technical support was provided to each individual institution as needed. Results Eleven provincial hospitals across the country have now integrated palliative care services (Palliative Care Units) and are now centres of excellence. Over 220 healthcare providers have been trained, and approximately, over 30,000 patients have benefited from these services. Oral morphine is now available in the hospital palliative care units. Conclusion As a success of the pilot project, Kenya Hospices and Palliative Care Association (KEHPCA) is now working with the Ministry of Health Kenya to integrate palliative care services in 30 other county hospitals across the country, thus ensuring more availability and access to more patients. Other developing countries can learn from Kenya’s successful experience.

  15. Opportunities to maximize value with integrated palliative care

    OpenAIRE

    Bergman, Jonathan; Laviana, Aaron A

    2016-01-01

    Palliative care involves aggressively addressing and treating psychosocial, spiritual, religious, and family concerns, as well as considering the overall psychosocial structures supporting a patient. The concept of integrated palliative care removes the either/or decision a patient needs to make: they need not decide if they want either aggressive chemotherapy from their oncologist or symptom-guided palliative care but rather they can be comanaged by several clinicians, including a palliative...

  16. [NURSING ETHICS ISSUES IN PALLIATIVE CARE].

    Science.gov (United States)

    González-Serna, José María; de Llanos Peña, Francisco

    2014-09-01

    The aim of this paper is to describe the essential anthropological categories of terminal illness and the main attitudes of nurses for their care and the ethical criteria for indication and application of palliative therapies. We conclude that ethical attitudes of care in palliative care nursing are based in anthropological categories of dying process; the access granted to nurse by the patient and family within their privacy generates a relational context where communication can be made more effective and thus facilitate the coping existential, spiritual and psychosocial in illness and the process of diagnostic and prognostic information. The qualitative and quantitative clinical information provided by the nursing professional to multidisciplinary team on the evaluation of the effectiveness of care outcomes and therapies in the context of terminal illness assistance allows establishing a plan of treatment appropriate ethically. PMID:26117997

  17. Supportive and Palliative Care of Pancreatic Cancer

    OpenAIRE

    Salman Fazal; Muhammad Wasif Saif

    2007-01-01

    Pancreatic cancer is one of the most lethal malignancies. An estimated 32,300 patients will die of pancreatic cancer in year 2006. It is the tenth most common malignancy in the United State. Despite recent advances in pathology, molecular basis and treatment, the overall survival rate remains 4% for all stages and races. Palliative care represents an important aspect of care in patient with pancreatic malignancy. Identifying and treating disease related symptomology are priorities. As a physi...

  18. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... 1,257 views 1:05:13 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 50,610 views 13:34 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 616,342 views 7:46 Dr. Patti Brennan: ... The Cost of Dying: End-of-Life Care - Duration: 14:20. CBS 60,768 views 14: ...

  19. The Role of Psychology in Pediatric Palliative Care.

    Science.gov (United States)

    Edlynn, Emily; Kaur, Harpreet

    2016-07-01

    Pediatric medicine increasingly has recognized the value of integrating behavioral health in medical care, but this trend has not yet extended to pediatric palliative care. Results from a recent survey of pediatric palliative care programs across the United States indicate that team composition almost never included a psychologist. This article presents a model of collaborative care to optimize the integration of psychosocial and medical aspects of treatment in pediatric palliative care, delineating how a psychologist adds to this model. This article argues that psychology brings specialized skills in assessment, intervention, and research that fit with the premise of palliative care as a holistic approach that relieves symptoms. Systematic inclusion of psychologists on pediatric palliative care teams may help to improve effectiveness of services as well as extend the knowledge base of mental health in pediatric palliative care. PMID:27008276

  20. Perception of older adults receiving palliative care

    Directory of Open Access Journals (Sweden)

    Fernanda Laporti Seredynskyj

    2014-06-01

    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.

  1. Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals

    OpenAIRE

    Ryan, T; Ingleton, C.; Gardiner, C.; Parker, C; Gott, M.; Noble, B

    2013-01-01

    Background: The requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and nonmalignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criter...

  2. [Palliative care needs in advanced chronic illness].

    Science.gov (United States)

    Tripodoro, Vilma A; Rynkiewicz, María C; Llanos, Victoria; Padova, Susana; De Lellis, Silvina; De Simone, Gustavo

    2016-01-01

    About 75% of population will die from one or more chronic progressive diseases. From this projection WHO urged countries to devise strategies for strengthening palliative treatment as part of comprehensive care. In Catalonia, Spain, direct measurement of the prevalence of these patients with NECPAL CCOMS-ICO© tool was 1.5% of the population. This tool is an indicative, not dichotomous, quali-quantitative multifactorial evaluation to be completed by the treating physician. In Argentina there is no information on these patients. Our goal was to explore and characterize the proportion of chronically ill patients in palliative care needs, by NECPAL CCOMS-ICO© tool, in an accessible population of the City of Buenos Aires. General hospitals of the Health Region 2 (Piñero, álvarez and Santojanni) and its program areas were surveyed. In Health Region 1, we surveyed the Udaondo gastroenterology hospital. A total of 53 physicians (704 patients) were interviewed. It was identified that 29.5% of these patients were affected by advanced chronic diseases; 72.1% of them were NECPAL positive, younger (median 64) than in others studies, and more than 98% presented high levels of comorbidity. Palliative care demand (31.4%) and needs (52.7%) were recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify, with an instrument not based on mortality that, in Buenos Aires City, 1 in 3 patients with chronic diseases could die in the next year and had palliative care needs. PMID:27295702

  3. [Use of music in palliative care].

    Science.gov (United States)

    Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana

    2011-12-01

    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

  4. Palliative care needs in Malawi: Care received by people living with HIV

    Directory of Open Access Journals (Sweden)

    Esmie Mkwinda

    2016-02-01

    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

  5. Palliative care in India: Situation assessment and future scope

    Directory of Open Access Journals (Sweden)

    S S Kar

    2015-01-01

    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.

  6. [Providing regular relief; considerations for palliative care in the Netherlands].

    Science.gov (United States)

    Crul, B J; van Weel, C

    2001-10-20

    Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres. PMID:11695096

  7. Palliative care in India: Current progress and future needs

    Directory of Open Access Journals (Sweden)

    Divya Khosla

    2012-01-01

    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.

  8. Palliative care in India: Situation assessment and future scope

    OpenAIRE

    S S Kar; Subitha, L.; S Iswarya

    2015-01-01

    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 i...

  9. Ethical issues in palliative care.

    Science.gov (United States)

    Randall, F M

    1999-10-01

    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. PMID:10522743

  10. Chronic pain management as a barrier to pediatric palliative care.

    Science.gov (United States)

    Thompson, Lindsay A; Meinert, Elizabeth; Baker, Kimberly; Knapp, Caprice

    2013-12-01

    Pain is common as a presenting complaint to outpatient and emergency departments for children, yet pain management represents one of the children's largest unmet needs. A child may present with acute pain for an intermittent issue or may have acute or chronic pain in the setting of chronic illness. The mainstay of treatment for pain uses a stepwise approach for pain management, such as set up by the World Health Organization. For children with life-limiting illnesses, the Institute of Medicine guidelines recommends referral upon diagnosis for palliative care, meaning that the child receives comprehensive services that include pain control in coordination with curative therapies; yet barriers remain. From the provider perspective, pain can be better addressed through a careful assessment of one's own knowledge, skills, and attitudes. The key components of pain management in children are multimodal, regardless of the cause of the pain. PMID:23329083

  11. Creation of minimum standard tool for palliative care in India and self-evaluation of palliative care programs using it

    Directory of Open Access Journals (Sweden)

    M R Rajagopal

    2014-01-01

    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.

  12. Using cannabinoids in pain and palliative care.

    Science.gov (United States)

    Peat, Sue

    2010-10-01

    Interest in the use of cannabinoids in a clinical setting is gradually increasing, particularly in patients where more conventional treatments have failed. They have been reported as offering perceived benefits in a wide range of conditions, but the major interest at present is centred on their place in pain management and in the palliation of symptoms secondary to terminal cancer and neurological disease. The potential benefits include symptomatic relief for patients suffering from intractable neuropathic pain, anorexia, anxiety and muscle spasm. There is clear consensus that cannibinoids should not be used as a first-line monotherapy, but should be considered as valuable adjuvants to more commonly indicated therapeutic options in the management of palliative care patients. Scientific evidence documenting the benefits of the canibinoids nabilone and sativex is accumulating, but needs to be evaluated carefully in the light of the paucity of available data. Both drugs are usually used under the guidance of specialist units. Nabilone and Sativex are now controlled drugs, and are frequently used outside of their licensed indication (control of chemotherapy-induced nausea and vomiting) and hence particular care needs to be taken in evaluating the rational for their use. Sativex has been recently licenced for use in the management of patients with multiple sclerosis. PMID:20972379

  13. "PRIMARY PALLIATIVE CARE? - Treating terminally ill cancer patients in the primary care sector"

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn; Jensen, AB; Olesen, Frede;

    2006-01-01

    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,...

  14. Pediatric palliative care online: the views of health care professionals.

    Science.gov (United States)

    Ens, Carla D L; Chochinov, Harvey M; Bérard, Josette L M; Harlos, Mike S; Stenekes, Simone J; Wowchuk, Suzanne M

    2008-01-01

    The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations. PMID:18459596

  15. Improving search filter development: a study of palliative care literature

    Directory of Open Access Journals (Sweden)

    Tieman Jennifer

    2007-06-01

    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.

  16. Pediatric palliative care in the community.

    Science.gov (United States)

    Kaye, Erica C; Rubenstein, Jared; Levine, Deena; Baker, Justin N; Dabbs, Devon; Friebert, Sarah E

    2015-01-01

    Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed. PMID:25955682

  17. Japanese Bereaved Family Members' Perspectives of Palliative Care Units and Palliative Care: J-HOPE Study Results.

    Science.gov (United States)

    Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Shoji, Ayaka; Chiba, Yurika; Miyazaki, Tamana; Tsuneto, Satoru; Shima, Yasuo

    2016-06-01

    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. PMID:25852202

  18. Edmonton, Canada: a regional model of palliative care development.

    Science.gov (United States)

    Fainsinger, Robin L; Brenneis, Carleen; Fassbender, Konrad

    2007-05-01

    Palliative care developed unevenly in Edmonton in the 1980s and early 1990s. Health care budget cuts created an opportunity for innovative redesign of palliative care service delivery. This report describes the components that were developed to build an integrated comprehensive palliative care program, the use of common clinical assessments and outcome evaluation that has been key to establishing credibility and ongoing support. Our program has continued to develop and grow with an ongoing focus on the core areas of clinical care, education, and research. PMID:17482060

  19. Overcoming Recruitment Challenges in Palliative Care Clinical Trials

    OpenAIRE

    LeBlanc, Thomas W.; Lodato, Jordan E.; Currow, David C; Abernethy, Amy P.

    2013-01-01

    Challenges to clinical trial recruitment in palliative care are significant but not insurmountable. Through their experience with designing and deploying a social-marketing based protocol, the authors show that a carefully crafted recruitment and retention protocol can be effective.

  20. Nurses’ Knowledge of Palliative Care in the Pneumological Hospital

    Directory of Open Access Journals (Sweden)

    Inarvis Medina González

    2015-09-01

    Full Text Available Background: application of palliative care to patients with chronic respiratory conditions is a current problem related to the quality of nursing care provided to them.Objective: to identify the nurses’ level of knowledge of palliative care for patients with chronic respiratory conditions in the Pneumological Hospital.Methods: a descriptive study was conducted in the Pneumological Hospital from January through May 2014. It included 33 nurses who provide care to hospitalized patients. The variables analyzed were years of experience, educational level, knowledge of defining aspects of palliative care, pain management, intervention for control of dyspnea, criteria for drug administration and choice of route of administration as well as nurses’ perception of their knowledge of palliative care. Results: thirty percent have more than 30 years of professional work experience, 51% are graduates. Fifty four point five percent consider that palliative care should not be provided at home; 63.6% believe that they should not be provided to patients with chronic non-cancerous diseases in advanced stages; 69.9% suggest that mixed therapies should not be used for pain management; 51.5% do not consider that breathing techniques should be used to control dyspnea. Forty eight point four percent recognize their lack of knowledge about palliative care. Conclusions: nurses from the Pneumological Hospital do not have sufficient knowledge about the different dimensions of palliative care for patients with chronic respiratory conditions.

  1. [Palliative Care for Non-cancer Patients].

    Science.gov (United States)

    Ikegaki, Junichi

    2016-03-01

    Although palliative care has been developed and implemented as care for cancer pain, it is holistic care for suffering that includes physical, psychosocial and spiritual pain of life-threatening illness. It turned out that non-cancer patients in the end-stage are also suffering from various pain that should be treated as cancer patients. Trajectories of illness in non-cancer patients are with more gradual decline than those of cancer patients with steady progression and it is often difficult to make decision about end-of-life. The purpose of advance care planning was originally to help describe legal documents. This process is proved to contribute to improving QOL of patients and their families to discuss preference, hope, economic problems, spiritual question as well as medical treatment In Japan guideline of decision making process in end-of-life stage has been established. A program of communication training in end-of-life discussion has been made. Under current situation some comments on the role of anesthesiologists are also mentioned. PMID:27097506

  2. The distinct role of palliative care in the surgical intensive care unit.

    Science.gov (United States)

    Schulz, Valerie; Novick, Richard J

    2013-12-01

    Palliative care is expanding its role into the surgical intensive care units (SICU). Embedding palliative philosophies of care into SICUs has considerable potential to improve the quality of care, especially in complex patient care scenarios. This article will explore palliative care, identifying patients/families who benefit from palliative care services, how palliative care complements SICU care, and opportunities to integrate palliative care into the SICU. Palliative care enhances the SICU team's ability to recognize pain and distress; establish the patient's wishes, beliefs, and values and their impact on decision making; develop flexible communication strategies; conduct family meetings and establish goals of care; provide family support during the dying process; help resolve team conflicts; and establish reasonable goals for life support and resuscitation. Educational opportunities to improve end-of-life management skills are outlined. It is necessary to appreciate how traditional palliative and surgical cultures may influence the integration of palliative care into the SICU. Palliative care can provide a significant, "value added" contribution to the care of seriously ill SICU patients. PMID:24071600

  3. Palliative care -- an essential component of cancer control

    OpenAIRE

    Macdonald, N.

    1998-01-01

    Unlike in other nations, in Canada palliative care has its origins in university hospitals. It has subsequently developed in a few Canadian schools as an academic discipline closely linked with oncology programs. Although this model is successful, other faculties of medicine and cancer centres have been slow to emulate it. Today, the situation is rapidly changing, and both palliative care and oncology professionals are re-examining the manifest need for collaborative efforts in patient care, ...

  4. Generalist primary and palliative care is associated with few hospitalisations in the last month of life.

    NARCIS (Netherlands)

    Onwuteaka-Philipsen, B.; Korte-Verhoef, M.C. de; Schweitzer, B.; Francke, A.L.; Deliens, L.; Pasman, H.R.W.

    2015-01-01

    Background: Hospitalisations in the last phase of life may be related to poor quality of palliative care at home. In the Netherlands, that has a generalist palliative care model, palliative care at home can be given by generalist and palliative care consultants. Aim: To study the association between

  5. Palliative care for adolescents and young adults with cancer

    Directory of Open Access Journals (Sweden)

    Rosenberg AR

    2013-03-01

    Full Text Available Abby R Rosenberg,1–3 Joanne Wolfe4–61Division of Pediatric Hematology/Oncology, Seattle Children’s Hospital, Seattle, WA; 2Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA; 3Department of Pediatrics, University of Washington, Seattle, WA; 4Department of Psychosocial Oncology and Palliative Care/Division of Pediatric Palliative Care, Dana-Farber Cancer Institute, Boston, MA; 5Department of Medicine/Division of Hematology/Oncology, Boston Children’s Hospital, Boston, MA; 6Department of Pediatrics, Harvard University School of Medicine, Boston, MA, USAAbstract: Adolescents and young adults (AYAs with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.Keywords: supportive care, end of life, psychosocial outcomes, psychosocial oncology, psychosocial needs, quality of life

  6. [Euthanasia and palliative care in the Netherlands].

    Science.gov (United States)

    Boisseau, Nicolas

    2004-03-27

    THE BIRTH OF THE DUTCH LAW: Euthanasia has been recently legalized in the Netherlands (since April 1, 2002). In this Article, we present the various cultural and historical factors that contributed to the law, the guidelines for the procedure and the resulting controversy. THE INTERVENING FACTORS: Internationally, the attitude concerning end of life care are heterogenic and also directly depend on religious and cultural factors. In the Netherlands, the health system promotes the maintenance at home of the terminally ill. However, the financial aspects (private health insurance) interact with the management of these patients. The rules for euthanasia are very strict and a declaration must be registered. Dedicated commissions are organised to control that the rules are applied. The current debate concerns the pertinence of the regulations, the attitude towards handicapped people and children, and the need to develop palliative care. The latter have only recently been developed in the country. The priority is focusing on old peoples' homes. The Netherlands is slow in this regard, but a new draft law is soon to be presented to the Authorities, and will most probably enable the gaps to be bridged. PMID:15105777

  7. The role of dentist in palliative care team

    Directory of Open Access Journals (Sweden)

    Rani P Mol

    2010-01-01

    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.

  8. Smarter palliative care for cancer: Use of smartphone applications

    Directory of Open Access Journals (Sweden)

    Nisha Rani Jamwal

    2016-01-01

    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.

  9. Cooperating with a palliative home-care team

    DEFF Research Database (Denmark)

    Goldschmidt, Dorthe; Groenvold, Mogens; Johnsen, Anna Thit;

    2005-01-01

    . 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......BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one...... month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced by...

  10. Pharmacological treatments for fatigue associated with palliative care

    OpenAIRE

    Mücke, M.; Mochamat; Cuhls, H; Peuckmann-Post, V.; Minton, O.; Stone, P.; Radbruch, L.

    2015-01-01

    BACKGROUND: This review updates the original review, 'Pharmacological treatments for fatigue associated with palliative care' and also incorporates the review 'Drug therapy for the management of cancer-related fatigue'.In healthy individuals, fatigue is a protective response to physical or mental stress, often relieved by rest. By contrast, in palliative care patients' fatigue can be severely debilitating and is often not counteracted with rest, thereby impacting daily activity and quality of...

  11. Opportunities to maximize value with integrated palliative care

    OpenAIRE

    Bergman J; Laviana AA

    2016-01-01

    Jonathan Bergman,1–3 Aaron A Laviana,1 1Department of Urology, 2Department of Family Medicine, David Geffen School of Medicine at UCLA, 3Veterans Health Affairs-Greater Los Angeles, Los Angeles, CA, USA Abstract: Palliative care involves aggressively addressing and treating psychosocial, spiritual, religious, and family concerns, as well as considering the overall psychosocial structures supporting a patient. The concept of integrated palliative care removes the either/or decision a pa...

  12. Opportunities to maximize value with integrated palliative care

    OpenAIRE

    Bergman, Jonathan

    2016-01-01

    Jonathan Bergman,1–3 Aaron A Laviana,1 1Department of Urology, 2Department of Family Medicine, David Geffen School of Medicine at UCLA, 3Veterans Health Affairs-Greater Los Angeles, Los Angeles, CA, USA Abstract: Palliative care involves aggressively addressing and treating psychosocial, spiritual, religious, and family concerns, as well as considering the overall psychosocial structures supporting a patient. The concept of integrated palliative care removes the either/or decision ...

  13. Retroperitoneal Endodermal Sinus Tumor Patient with Palliative Care Needs.

    Science.gov (United States)

    Kashyap, Surbhi

    2016-01-01

    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. PMID:26962288

  14. Palliative care in medical outliers with heart failure

    OpenAIRE

    Jammula Prabhakar Patro; Pavani Priyadarsini

    2016-01-01

    Medical outliers are the patients who present to medical practices without health insurance or with serious co-morbidities needing prolonged hospital stay. Palliative care is part of standard guidelines for management of heart failure. But in medical outliers suffering from heart failure, palliative care should begin more early than it is recommended in standard guidelines because of financial reasons. It is suggested that guidelines be framed also for medical outliers with heart failure. It ...

  15. Retroperitoneal endodermal sinus tumor patient with palliative care needs

    Directory of Open Access Journals (Sweden)

    Surbhi Kashyap

    2016-01-01

    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

  16. European Association for Palliative Care (EAPC framework for palliative sedation: an ethical discussion

    Directory of Open Access Journals (Sweden)

    Juth Niklas

    2010-09-01

    Full Text Available Abstract Background The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care. Discussion We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why. Conclusions The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.

  17. Impact of pain and palliative care services on patients

    Directory of Open Access Journals (Sweden)

    S Santha

    2011-01-01

    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.

  18. Changing the focus of care: from curative to palliative care

    Directory of Open Access Journals (Sweden)

    Silvia Soffritti

    2014-06-01

    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 

  19. Treating nausea and vomiting in palliative care: a review

    Directory of Open Access Journals (Sweden)

    Glare P

    2011-09-01

    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

  20. An Ecological Understanding of Caregiver Experiences in Palliative Care.

    Science.gov (United States)

    Chandran, Devyani; Corbin, J Hope; Shillam, Casey

    2016-01-01

    Palliative care is specialized health care to improve quality of life for patients with serious illness and their families through prevention and relief of suffering. A Palliative Care Institute was held in western Washington to capture community voices about diverse needs, strengths, and opportunities for improvement of palliative care. Researchers employed qualitative methods to obtain thematic data, provide real-time analysis, and engage in a multivoting technique to reflect stakeholder interest in individual themes and prioritize larger group interests. Bronfenbrenner's ecological systems framework was used to explore caregiver experiences. Within the microsystem, caregivers reported difficulties in interactions with medical providers as a key challenge. Within the mesosysytem, interactions between patients and medical providers and the impact on caregivers were explored. Within the exosystem, caregivers reported lack of control over the schedules of personal care staff. Macrosystem influences included impact of local culture on the development of palliative care services. Chronosystem influences include de-medicalization of childbirth and its impact on perceptions of palliative care. Implications include the need for social workers to be proactive in fostering trust and effective communication between care providers and caregivers, and the demand for health care provider training in communication with patients and families. PMID:27143579

  1. Meaning and practice of palliative care for hospitalized older adults with life limiting illnesses.

    Science.gov (United States)

    Powers, Bethel Ann; Norton, Sally A; Schmitt, Madeline H; Quill, Timothy E; Metzger, Maureen

    2011-01-01

    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. PMID:21584232

  2. Shared Care in Basic Level Palliative Home Care: Organizational and Interpersonal Challenges

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn; Olesen, Frede; Jensen, Anders Bonde;

    2010-01-01

    Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care.......Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care....

  3. Integration of early specialist palliative care in cancer care: Survey of oncologists, oncology nurses, and patients

    Directory of Open Access Journals (Sweden)

    Naveen Salins

    2016-01-01

    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.

  4. Radiotherapy in Palliative Cancer Care: Development and Implementation

    International Nuclear Information System (INIS)

    It is estimated that in 2008 there were over 12 million new cancer diagnoses and 7 million cancer deaths worldwide. The World Health Organisation (WHO) predicts that cancer rates will increase from 10 million to 24 million in the next 50 years. More than half of cancer cases will be diagnosed in low income nations, where 80% or more of patients will have incurable disease at diagnosis. In situations where most patients are diagnosed with incurable disease or where curative treatment is logistically unavailable, as is the case in many low income countries, the allocation of limited health care resources should reflect a greater emphasis on palliative care. Ironically, access to palliative care is greater in health care systems with well developed infrastructures and facilities for prevention, early detection, and curative treatment of cancer. To provide comprehensive cancer care, a multidisciplinary approach is needed. This maximizes the available treatments and interventions, whilst ensuring a cost effective and ethically sound approach to the treatment of patients at each stage of the disease. Barriers to palliative care may result from its low prioritization in health care policy and education. The WHO expert committee on cancer pain and palliative care report of 1990 called for the integration of efforts directed at maintaining patient quality of life through all stages of cancer treatment. As a result supportive interventions aimed at improving quality of life are needed for patients undergoing both curative and palliative cancer treatment. The International Atomic Energy Agency is currently collaborating with the Open Society Institute to develop palliative care programmes in Eastern Europe, Africa and India, as well as supporting programmes in other regions of the world, through the International Palliative Care Initiative. OSI partners with the IAEA's Programme of Action for Cancer Therapy, the World Health Organization, the International Agency for Research

  5. 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

    DEFF Research Database (Denmark)

    Johnsen, Anna Thit; Damkier, Anette; Vejlgaard, Tove Bahn; Lindschou, Jane; Sjøgren, Per; Gluud, Christian Nyfeldt; Neergaard, Mette Asbjørn; Petersen, Morten Aa; Lundorff, Lena Elisabeth; Pedersen, Lise; Fayers, Peter; Strömgren, Annette S; Higginson, Irene J; Groenvold, Mogens

    2013-01-01

    Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems.The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report...... palliative needs in a screening, will benefit from being referred to 'early SPC'....

  6. Spirituality in palliative home care: a framework for the clinician

    NARCIS (Netherlands)

    Vermandere, M.; Lepeleire, J. De; Mechelen, W. van; Warmenhoven, F.C.; Thoonsen, B.A.; Aertgeerts, B.

    2013-01-01

    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

  7. Improving Palliative Care Team Meetings: Structure, Inclusion, and "Team Care".

    Science.gov (United States)

    Brennan, Caitlin W; Kelly, Brittany; Skarf, Lara Michal; Tellem, Rotem; Dunn, Kathleen M; Poswolsky, Sheila

    2016-07-01

    Increasing demands on palliative care teams point to the need for continuous improvement to ensure teams are working collaboratively and efficiently. This quality improvement initiative focused on improving interprofessional team meeting efficiency and subsequently patient care. Meeting start and end times improved from a mean of approximately 9 and 6 minutes late in the baseline period, respectively, to a mean of 4.4 minutes late (start time) and ending early in our sustainability phase. Mean team satisfaction improved from 2.4 to 4.5 on a 5-point Likert-type scale. The improvement initiative clarified communication about patients' plans of care, thus positively impacting team members' ability to articulate goals to other professionals, patients, and families. We propose several recommendations in the form of a team meeting "toolkit." PMID:25794871

  8. Integrating palliative care in public health: the Colombian experience following an international pain policy fellowship.

    Science.gov (United States)

    Leon, Marta; Florez, Sandra; De Lima, Liliana; Ryan, Karen

    2011-06-01

    Access to palliative care is insufficient in many countries around the world. In an effort to improve access to palliative care services and treatments, a public health approach as suggested by the World Health Organization was implemented in Colombia to improve opioid availability, increase awareness and competences about palliative care for healthcare workers, and to include palliative care as a component of care in legislation. As a result, opioid availability has improved, a mandatory palliative care course for medical undergraduate students has been implemented and a palliative care law is being discussed in the Senate. This article describes the strategy, main achievements and suggestions for implementing similar initiatives in developing countries. PMID:21228093

  9. Palliative care in Enugu, Nigeria: Challenges to a new practice

    Directory of Open Access Journals (Sweden)

    Tonia C Onyeka

    2011-01-01

    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.

  10. End-of-life care: identifying an appropriate legal framework for specialist palliative care in Ireland

    OpenAIRE

    Lombard, John

    2014-01-01

    This thesis argues that the legal framework in Ireland for specialist palliative care is inadequate and consequently a more appropriate legal framework must be identified. This research is guided by three central research questions. The first central research question examines the legitimacy of the distinction between specialist palliative care and euthanasia. The second central research question asks what legal framework currently exists in Ireland for specialist palliative care. The third c...

  11. Health care professionals' perceptions towards lifelong learning in palliative care for general practitioners: a focus group study

    OpenAIRE

    Pype, Peter; Symons, Linda; Wens, Johan; Van den Eynden, Bart; Stes, Ann; Deveugele, Myriam

    2014-01-01

    Background: There is a growing need for palliative care. The majority of palliative patients prefer their general practitioner (GP) to organize their palliative home care. General practitioners need a range of competences to perform this task. However, there has been no general description so far of how GPs keep these competences up-to-date. The present study explores current experiences, views and preferences towards training and education in palliative care among GPs, palliative home-care p...

  12. Evidence of improved quality of life with pediatric palliative care.

    Science.gov (United States)

    O'Quinn, Lucy P; Giambra, Barbara K

    2014-01-01

    Pediatric nurses provide holistic family-centered care for children with life-limiting illnesses while being sensitive to children's growth and developmental needs. To learn how pediatric palliative care programs benefit children and their families, the following clinical question was asked: Among children with a life-limiting illness, does the use of a palliative care program compared with not using a palliative care program improve quality of life for patients and their families? Evidence from two studies found that palliative care services improve quality of life for children with life-limiting illness and their families in the areas of the child's emotional well-being and parental perception of preparation for the child's end of life, resulting in a low grade for the body of evidence. Future research should include high quality studies with larger sample sizes and control groups, and include children's perspectives--from both patients and siblings--to give a more complete picture of how best to improve their quality of life. A reliable tool is needed that includes a spiritual component and sensitive indicators specific to children with a life-limiting illness. Future research using this tool will more fully answer how palliative care services improve children's quality of life. PMID:25929123

  13. Study of nurses′ knowledge about palliative care: A quantitative cross-sectional survey

    OpenAIRE

    Venkatesan Prem; Harikesavan Karvannan; Kumar, Senthil P; Surulirajan Karthikbabu; Nafeez Syed; Vaishali Sisodia; Saroja Jaykumar

    2012-01-01

    Context: Studies have documented that nurses and other health care professionals are inadequately prepared to care for patients in palliative care. Several reasons have been identified including inadequacies in nursing education, absence of curriculum content related to pain management, and knowledge related to pain and palliative care. Aims: The objective of this paper was to assess the knowledge about palliative care amongst nursing professionals using the palliative care knowledge tes...

  14. Self-assessment in cancer patients referred to palliative care

    DEFF Research Database (Denmark)

    Strömgren, Annette S; Goldschmidt, Dorthe; Groenvold, Mogens;

    2002-01-01

    -based study using the European Organization for Research and Treatment of Cancer quality-of-life instrument EORTC QLQ-C30, the Edmonton Symptom Assessment System (ESAS), and the Hospital Anxiety and Depression Scale (HADS) in cancer patients who were receiving palliative care. This report describes the......-based study of symptomatology in consecutive cancer patients in palliative care, achieving rather complete data from the participants. The symptomatology in these patients was very pronounced. The questionnaires were able to detect clinically important differences between places of service.......BACKGROUND: Research in palliative care is considered difficult due to the poor health of patients. However, patient-provided data are essential for a thorough description of patient symptomatology and for the evaluation of care. METHODS: The authors examined the feasibility of a questionnaire...

  15. The importance of measuring customer satisfaction in palliative care.

    Science.gov (United States)

    Turriziani, Adriana; Attanasio, Gennaro; Scarcella, Francesco; Sangalli, Luisa; Scopa, Anna; Genualdo, Alessandra; Quici, Stefano; Nazzicone, Giulia; Ricciotti, Maria Adelaide; La Commare, Francesco

    2016-03-01

    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. PMID:26837318

  16. Inadequate Palliative Care in Chronic Lung Disease. An Issue of Health Care Inequality.

    Science.gov (United States)

    Brown, Crystal E; Jecker, Nancy S; Curtis, J Randall

    2016-03-01

    Patients with chronic lung diseases suffer higher symptom burden, lower quality of life, and greater social isolation compared with patients with other diagnoses, such as cancer. These conditions may be alleviated by palliative care, yet palliative care is used less by patients with chronic lung disease compared with patients with cancer. Underuse is due, in part, to poor implementation of primary palliative care and inadequate referral to specialty palliative care. Lack of primary and specialty palliative care in patients with chronic lung disease falls short of the minimum standard of competent health care, and represents a disparity in health care and a social injustice. We invoke the ethical principles of justice and sufficiency to highlight the importance of this issue. We identify five barriers to implementing palliative care in patients with chronic lung disease: uncertainty in prognosis; lack of provider skill to engage in discussions about palliative care; fear of using opioids among patients with chronic lung disease; fear of diminishing hope; and perceived and implicit bias against patients with smoking-related lung diseases. We propose mechanisms for improving implementation of palliative care for patients with chronic lung disease with the goal of enhancing justice in health care. PMID:26730490

  17. Acceptance of dying: a discourse analysis of palliative care literature.

    Science.gov (United States)

    Zimmermann, Camilla

    2012-07-01

    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. PMID:22513246

  18. Palliative care in COPD patients: is it only an end-of-life issue?

    Directory of Open Access Journals (Sweden)

    Annalisa Carlucci

    2012-12-01

    Full Text Available The presence of acute or chronic respiratory failure is often seen as a terminal phase of chronic obstructive pulmonary disease. A great variability in end-of-life practice is observed in these patients mainly because physicians are not always able to correctly predict survival. There is a need for a clear discussion about decision making earlier than when acute respiratory failure ensues. Indeed, a perceived poor quality of life does not necessarily correlate with a clear willingness to refuse invasive or noninvasive mechanical ventilation. It has been suggested to start palliative care earlier, together with curative and restorative care, when there is an increased intensity of symptoms. The patients eligible for palliative care are those complaining of breathlessness, pain, fatigue and depression, which in some studies accounted for a prevalence much higher than 50%. Among comfort measures for palliation, oxygen is frequently prescribed even when the criteria for long-term home oxygen therapy are not met; however, when compared with air, no benefits on dyspnoea have been found. The only drug with a proven effect on dyspnoea is morphine, but not when it is delivered with a nebuliser. Finally, noninvasive ventilation may be used only as a comfort measure for palliation to maximise comfort by minimising adverse effects.

  19. The role of palliative care in population management and accountable care organizations.

    Science.gov (United States)

    Smith, Grant; Bernacki, Rachelle; Block, Susan D

    2015-06-01

    By 2021, health care spending is projected to grow to 19.6% of the GDP, likely crowding out spending in other areas. The 2010 Affordable Care Act (ACA) attempts to curb health care spending by incentivizing high-value care through the creation of Accountable Care Organizations (ACOs), which assume financial risk for patient outcomes. With this financial risk, health systems creating ACOs will be motivated to pursue innovative care models that maximize the value of care. Palliative care, as an emerging field with a growing evidence base, is positioned to improve value in ACOs by increasing high-quality care and decreasing costs for the sickest patients. ACO leaders may find palliative care input valuable in optimizing high-quality patient-centered care in the accountable care environment; however, palliative care clinicians will need to adopt new models that extrapolate their direct patient care skills to population management strategies. We propose that palliative care specialists take on responsibilities for working with ACO leaders to broaden their mission for systemwide palliative care for appropriate patients by prospectively identifying patients with a high risk of death, high symptom burden, and/or significant psychosocial dysfunction, and developing targeted, "triggered" interventions to enhance patient-centered, goal-consistent, coordinated care. Developing these new population management competencies is a critical role for palliative care teams in the ACO environment. PMID:25723619

  20. Palliative Radiotherapy

    International Nuclear Information System (INIS)

    Palliative care does not attempt to prolong survival but to the achieve the highest quality of life both for the patient and their family covering their physical, psychological, social and spiritual needs. Radiotherapy (RT), one of the most important therapeutic modalities, has a great significance in palliative medicine for cancer since it attempts to reduce as much as possible the acute reaction associated with the treatment for the patient. (Author)

  1. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... 4,045,475 views 1:09:38 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 578, ... CAPC Palliative 54,349 views 5:53 Teen Cancer Stories | UCLA Daltrey/Townshend Teen & Young Adult Cancer ...

  2. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Health - Meriter 45,108 views 13:34 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 583, ... CAPC Palliative 54,477 views 5:53 Teen Cancer Stories | UCLA Daltrey/Townshend Teen & Young Adult Cancer ...

  3. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Western Reserve 6,162 views 12:07 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 621, ... CAPC Palliative 57,541 views 5:53 Teen Cancer Stories | UCLA Daltrey/Townshend Teen & Young Adult Cancer ...

  4. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Fauman 1,200 views 1:05:13 Phoebe's Cancer Story - Duration: 7:46. Family A-Fair 581, ... CAPC Palliative 54,477 views 5:53 Teen Cancer Stories | UCLA Daltrey/Townshend Teen & Young Adult Cancer ...

  5. Development and efficacy of music therapy techniques within palliative care.

    Science.gov (United States)

    Clements-Cortés, Amy

    2016-05-01

    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. PMID:25986297

  6. Is there a role of palliative care in the neonatal intensive care unit in India?

    Directory of Open Access Journals (Sweden)

    Manjiri P Dighe

    2011-01-01

    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.

  7. Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

    Science.gov (United States)

    Yu, Mo; Guerriere, Denise N; Coyte, Peter C

    2015-11-01

    In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

  8. Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions.

    Science.gov (United States)

    Slomka, Jacquelyn; Prince-Paul, Maryjo; Webel, Allison; Daly, Barbara J

    2016-01-01

    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. PMID:27053406

  9. Applying sociodramatic methods in teaching transition to palliative care.

    Science.gov (United States)

    Baile, Walter F; Walters, Rebecca

    2013-03-01

    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. PMID:22889858

  10. The palliative care needs of ethnic minority patients: staff perspectives.

    Science.gov (United States)

    Diver, Fiona; Molassiotis, Alexander; Weeks, Les

    2003-08-01

    The aim of this study was to assess palliative care staff's perceptions of multicultural care provision and explore the barriers and facilitators to culturally sensitive care. Qualitative semi-structured interviews with five palliative care staff were conducted. Staff showed awareness of inter-cultural diversity and the importance of individualized care. It also became apparent that staff did not possess ethnocentric attitudes. Facilitators of multicultural care that emerged from the data included training, learning from experience, the use of culturally specific literature and resources, and effective communication channels in the team. However, barriers were present, including limited interpreting services, and some staff and other patients' negative behaviours towards ethnic minority patients. The findings lead to recommendations for better resourcing and expansion of interpreting services, and for more training, based on staff's desire for limited culturally specific knowledge in sensitive combination with an individualized care philosophy. PMID:12968120

  11. Intercultural palliative care: do we need cultural competence?

    Science.gov (United States)

    Gunaratnam, Yasmin

    2007-10-01

    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. PMID:18073705

  12. [Palliative care: an approach based on the professional health categories].

    Science.gov (United States)

    Hermes, Hélida Ribeiro; Lamarca, Isabel Cristina Arruda

    2013-09-01

    Palliative care has emerged as a humanitarian philosophy of caring for terminally ill patients, alleviating their pain and suffering. This care involves the action of an interdisciplinary team, in which all the professional recognize the limits of their performance will help the terminally ill patient to die with dignity. This article deals with the issue of death and dying, both from the traditional and the contemporary standpoint, and how palliative care have been treated in the job categories of medicine, social work, psychology and nursing. The methodology of this study consists of a literature review of articles in the SciELO database, electronic journals and technical books related to the topic. Analysis of the articles revealed a shortage of subjects that deal with the theme of death in professional curricula, as well as few palliative care services in Brazilian society and barriers faced by this new approach to the terminal patient. This research aims to broaden the discussion of palliative care in public health, and provide information for future studies that will address the theme. PMID:23989564

  13. Effectiveness of "palliative care information booklet" in enhancing nurses′ knowledge

    Directory of Open Access Journals (Sweden)

    Anita David

    2010-01-01

    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

  14. The global state of palliative care-progress and challenges in cancer care.

    Science.gov (United States)

    Reville, Barbara; Foxwell, Anessa M

    2014-07-01

    All persons have a right to palliative care during cancer treatment and at the end-of-life. The World Health Organization (WHO) defines palliative care as a medical specialty that addresses physical, psychological, social, legal, and spiritual domains of care by an interdisciplinary team of professional and lay health care providers. Widespread adoption of this universal definition will aid policy development and educational initiatives on a national level. The need for palliative care is expanding due to the aging of the world's population and the increase in the rate of cancer in both developed and developing countries. However, in one third of the world there is no access to palliative care for persons with serious or terminal illness. Palliative care improves symptoms, most frequently pain, and improves quality of life for patients and their families, especially in the terminal disease phase. Accessibility to palliative care services, adequately trained health care professionals, availability of essential medicines, and gaps in education vary greatly throughout the world. Pain management is an integral concept in the practice of palliative care; however, opioiphobia, insufficient supply of opioids, and regulatory restrictions contribute to undue suffering for millions. Ongoing advocacy efforts call for increased awareness, palliative care integration with cancer care, and public and professional education. Enacting necessary change will require the engagement of health ministries and the recognition of the unique needs and resources of each country. The aim of this review is to examine progress in palliative care development and explore some of the barriers influencing cancer care across the globe. PMID:25841689

  15. Team Interactions in Specialized Palliative Care Teams: A Qualitative Study

    OpenAIRE

    Klarare, Anna; Hagelin, Carina Lundh; Fürst, Carl Johan; Fossum, Bjoorn

    2013-01-01

    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...

  16. Reality of evidence-based practice in palliative care.

    Science.gov (United States)

    Visser, Claire; Hadley, Gina; Wee, Bee

    2015-09-01

    There has been a paradigm shift in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically significant benefits may be marginal and may not be related to clinical meaningfulness. The typical treatment vs. placebo comparison necessitated by 'gold standard' randomised controlled trials (RCTs) is not necessarily applicable. The 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 difficult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. This 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. The 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. PMID:26487964

  17. Reality of evidence-based practice in palliative care

    Institute of Scientific and Technical Information of China (English)

    Claire Visser; Gina Hadley; Bee Wee

    2015-01-01

    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.

  18. Palliative home care: A designer′s perspective

    Directory of Open Access Journals (Sweden)

    Tigmanshu Bhatnagar

    2015-01-01

    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.

  19. Determination of oxidative and occupational stress in palliative care workers

    OpenAIRE

    Casado Moragón, Ángela; Castellanos Asenjo, Alberto; López-Fernández, M.E.; Ruíz, R.; Imedio, E.L.; Castillo, C.; Fernández-Nieto, A.M.

    2011-01-01

    Background: In previous work, we demonstrated that some occupational workers in stressful conditions can have increases in several markers of oxidative stress when compared to other workers. We investigated two antioxidant enzymes, superoxide dismutase (SOD) and catalase (CAT) activities, and malondialdehyde (MDA) concentrations, according to demographics, lifestyle and occupational parameters in palliative care unit workers, and analyzed the relationship with occupational burnout. Methods: F...

  20. Initiating palliative care conversations: lessons from Jewish bioethics.

    Science.gov (United States)

    Schultz, Michael; Bar-Sela, Gil

    2013-03-01

    What are the ethical responsibilities of the medical staff (doctors, nurses, social workers, and chaplains) regarding the preservation of meaningful life for their patients who are approaching the end of life (EOL)? In particular, what is the staff's ethical responsibility to initiate a conversation with their patient regarding palliative care? By subjecting traditional Jewish teachings to an ethical analysis and then exploring the underlying universal principles, we will suggest a general ethical duty to inform patients of the different care options, especially in a manner that preserves hope. The principle that we can derive from Jewish bioethics teaches that the medical staff has a responsibility to help our patients live in a way that is consistent with how they understand their task or responsibility in life. For some patients, the best way to preserve a meaningful life in which they can fulfill their sense of purpose in the time that remains is to focus on palliation. For this reason, although palliative and supportive care are provided from the time of diagnosis, it is critical we make sure our patients realize that they have the opportunity to make a decision between either pursuing additional active treatments or choosing to focus primarily on palliative therapies to maximize quality of life. The Jewish tradition and our experience in spiritual care suggest the importance of helping patients preserve hope while, simultaneously, honestly acknowledging their situation. Staff members can play a vital role in helping patients make the most of this new period of their lives. PMID:23089233

  1. Specialized Pediatric Palliative Home Care: A Prospective Evaluation

    OpenAIRE

    Groh, Gesa; Borasio, Gian Domenico; Nickolay, Carla; Bender, Hans-Ulrich; von Lüttichau, Irene; Führer, Monika

    2013-01-01

    Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents.

  2. [Palliative care in non-cancer, chronic, progressive diseases].

    Science.gov (United States)

    Radványi, Ildikó; Nagy, Lajos; Balogh, Sándor; Csikós, Ágnes

    2015-10-18

    Malignant and other chronic diseases cause the death of 2.5 million people in Europe annually. It is anticipated that this number will grow due to the aging of the European population. The death of a significant proportion of patients having progressive chronic disease is preceded by an extended end of life stadium. In this stage the patients have severe symptoms and pain that necessitate their symptomatic treatment and palliative care. The assessment of the life expectancy of patients, estimation of the prognosis of their illness and, therefore, selection of patients with a need of intensified palliative care often pose difficulties. This paper provides a summary on the basic elements of "good palliative care". It introduces the most frequent models for the procession of chronic diseases and those indicators that help practicing doctors to recognise easier patients with a need of intensified palliative care, and as a result provides more adequate medical attendance that is better suited to the specific needs of the patients. PMID:26551310

  3. PRIMARY PALLIATIVE CARE? - Treating terminally ill cancer patients in the primary care sector

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn; Jensen, Anders Bonde; Olesen, Frede;

    BACKGROUND. Palliative care for cancer patients is an important part of a GP's work. Although every GP is frequently involved in care for terminally ill cancer patients, only little is known about how these palliative efforts are perceived by the patients and their families, a knowledge that is...... vital to further improve palliative care in the primary sector.AIM. The aim of the study was to analyse the quality of palliative home care with focus on the GP's role based on evaluations by relatives of recently deceased cancer patients and professionals from both the primary and secondary health care...... 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...

  4. Teaching Palliative Care Across Cultures: The Singapore Experience

    OpenAIRE

    Katrina Breaden

    2011-01-01

    Palliative care is a growing area of practice throughout the world and its promotion relies on adequately trained health care professionals. However, there are only a limited number of postgraduate academic courses or clinical training opportunities available, especially in resource challenged areas of the Asia Pacific region. This article outlines a creative endeavour between Flinders University, Adelaide Australia, the Singapore National Cancer Centre and the Asia Pacific Hospice and Pallia...

  5. Psychiatric Issues in Palliative Care: Assessing Mental Capacity

    OpenAIRE

    Itoro Udo; Zeid Mohammed; Amanda Gash

    2013-01-01

    Issues surrounding capacity to consent to or refuse treatment are increasingly receiving clinical and legal attention. Through the use of 3 case vignettes that involve different aspects of mental health care in palliative care settings, mental capacity issues are discussed. The vignettes tackle capacity in a patient with newly developed mental illness consequent to physical illness, capacity in a patient with mental illness but without delirium and capacity in a patient with known impairment ...

  6. Identification and characteristics of patients with palliative care needs in Brazilian primary care

    OpenAIRE

    Marcucci, Fernando C. I.; Cabrera, Marcos A. S.; Perilla, Anamaria Baquero; Brun, Marilia Maroneze; de Barros, Eder Marcos L.; Martins, Vanessa M.; Rosenberg, John P.; Yates, Patsy

    2016-01-01

    Background The Brazilian healthcare system offers universal coverage but lacks information about how patients with PC needs are serviced by its primary care program, Estratégia Saúde da Família (ESF). Methods Cross-sectional study in community settings. Patients in ESF program were screened using a Palliative Care Screening Tool (PCST). Included patients were assessed with Karnofsky Performance Scale (KPS), Edmonton Symptom Assessment System (ESAS) and Palliative Care Outcome Scale (POS). Res...

  7. Measuring the diffusion of palliative care in long-term care facilities – a death census

    OpenAIRE

    Santos-Eggimann Brigitte; Paroz Sophie

    2009-01-01

    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 d...

  8. Evaluating Palliative Care - A Review of the Literature

    Directory of Open Access Journals (Sweden)

    Hubert R. Jocham RN

    2009-01-01

    Full Text Available The purpose of this article was to investigate the outcome measures developed and used in palliative care. The paper involved a literature review of published research. Many of the reviewed papers concluded similarly that there was lack of good quality evidence on which to base conclusions. More high quality evidence is needed to compare the relative merits of the differences in models of palliative care services, so that we can learn from other appropriate systems of care at end of life. It follows that quality of life is the main outcome of palliative care, in which the patient instead of the disease represents the target of the clinical approach. Patients struggling with serious illness have other concerns, including managing pain and other symptoms, coordinating care among multiple providers and settings, ensuring that treatments reflect preferences and balance benefits and harms as well as clinical appropriateness, achieving empathic communication and care, fostering well-being, maintaining function and practically supporting family and caregivers through illness and bereavement.

  9. Palliative and end of life care for people living with dementia in care homes: part 1.

    Science.gov (United States)

    Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne

    2016-06-22

    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. PMID:27332611

  10. Teaching palliative care across cultures: The singapore experience

    Directory of Open Access Journals (Sweden)

    Katrina Breaden

    2011-01-01

    Full Text Available Palliative care is a growing area of practice throughout the world and its promotion relies on adequately trained health care professionals. However, there are only a limited number of postgraduate academic courses or clinical training opportunities available, especially in resource challenged areas of the Asia Pacific region. This article outlines a creative endeavour between Flinders University, Adelaide Australia, the Singapore National Cancer Centre and the Asia Pacific Hospice and Palliative Care Network to provide an educational opportunity for students from the region. The strengths of the programme include its strong theoretical and evidenced-based framework, its multidisciplinary inclusiveness and its innovative and interactive teaching style. The main teaching challenge for the teaching team is to deliver culturally appropriate curricula to students from diverse cultural and linguistic backgrounds. This postgraduate programme is an important initiative for the region and for the development of future leaders and pioneers in the discipline.

  11. The Culture of General Palliative Nursing Care in Medical Departments

    DEFF Research Database (Denmark)

    Bergenholtz, Heidi; Jarlbæk, Lene; Hølge-Hazelton, Bibi

    2015-01-01

    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 in...... medical departments. Methods: An ethnographic study, using Spradley's 12-step method, with observational field studies and interviews with nurses from three medical departments in a Danish regional hospital. Findings: Three cultural themes emerged from the analysis, focusing on the setting, the practice...... 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...

  12. French physicians' attitudes toward legalisation of euthanasia and the ambiguous relationship between euthanasia and palliative care.

    Science.gov (United States)

    Peretti-Watel, Patrick; Bendiane, Marc K; Galinier, Anne; Favre, Roger; Lapiana, Jean-Marc; Pégliasco, Hervé; Moatti, Jean-Paul

    2003-01-01

    In 1999, the French Parliament established a "right to palliative care", which reactivated public debate about euthanasia. In order to investigate jointly physicians' attitude toward palliative care and euthanasia, we conducted a cross-sectional survey of a national sample of French GPs, oncologists, and neurologists. Overall, 917 physicians participated in the survey. Significant proportions of respondents, especially among GPs and neurologists, considered that palliative sedation and withdrawing life-sustaining treatments (WLST) were euthanasia. Multivariate analysis showed that the physicians who had special medical training in palliative care, and those who distinguish palliative sedation and WLST from euthanasia were more likely to oppose legalisation of euthanasia. Thus, French physicians' attitude to the legalisation of euthanasia is strongly influenced by whether or not they distinguish palliative care from euthanasia. Improved palliative care requires better training of the entire medical profession, and clearer guidelines about which end-of-life care practices are legally and ethically acceptable. PMID:14959598

  13. Frequently Asked Questions (Palliative Care: Conversations Matter)

    Science.gov (United States)

    ... chaplains, and counselors. Support may involve art and music therapists, home health aides, nutritionists, and respite care ... getpalliativecare.org Pediatric Supportive Care for Children with Cancer (National Cancer Institute webpage) http://www.cancer.gov/ ...

  14. Palliative care among heart failure patients in primary care: a comparison to cancer patients using English family practice data.

    Directory of Open Access Journals (Sweden)

    Amy Gadoud

    Full Text Available INTRODUCTION: Patients with heart failure have a significant symptom burden and other palliative care needs often over a longer period than patients with cancer. It is acknowledged that this need may be unmet but by how much has not been quantified in primary care data at the population level. METHODS: This was the first use of Clinical Practice Research Datalink, the world's largest primary care database to explore recognition of the need for palliative care. Heart failure and cancer patients who had died in 2009 aged 18 or over and had at least one year of primary care records were identified. A palliative approach to care among patients with heart failure was compared to that among patients with cancer using entry onto a palliative care register as a marker for a palliative approach to care. RESULTS: Among patients with heart failure, 7% (234/3 122 were entered on the palliative care register compared to 48% (3 669/7 608 of cancer patients. Of heart failure patients on the palliative care register, 29% (69/234 were entered onto the register within a week of their death. CONCLUSIONS: This confirms that the stark inequity in recognition of palliative care needs for people with heart failure in a large primary care dataset. We recommend a move away from prognosis based criteria for palliative care towards a patient centred approach, with assessment of and attention to palliative needs including advance care planning throughout the disease trajectory.

  15. Cancer patients, emergencies service and provision of palliative care

    Directory of Open Access Journals (Sweden)

    Bruno Miranda

    2016-06-01

    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.

  16. Participation of radiotherapy in interdisciplinary palliative care units. Challenge and chance

    International Nuclear Information System (INIS)

    Background: in Germany, a sufficient system of palliative care does not exist. Possibilities for participation of radiooncologists in the further development of this promising part of medical action are reported. Material and methods: experiences from interdisciplinary work in the field of palliative care are described. This experience is communicated for use in the actual discussion about the future of palliative care in Germany, especially in the field of radiooncology. Results: a palliative care unit can only work in a team of different professions, which means different physicians, but also nurses, social workers, psychologists or pastors. A palliative care unit will benefit from working with radiooncologists as well as radiooncologists will do from working in the field of palliative care. Conclusion: in times of growing interest in and need for palliative care, radiooncologists should actively participate in the development of palliative care units in Germany. The aim of this participation should be to reasonably arrange the treatment of incurably ill patients with the chances of modern radiotherapy. Another aim should be to improve the treatment of ''classic'' radiation oncology patients by ideas of pallative care. The further development of palliative care in Germany should not take place without the participation of radiooncologists. This will meet the interests of palliative care and radiotherapy and - most importantly - the patients' interests. (orig.)

  17. Gynaecological malignancies from palliative care perspective

    Directory of Open Access Journals (Sweden)

    Kamlesh Mishra

    2011-01-01

    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.

  18. Providing Palliative Care to LGBTQ Patients.

    Science.gov (United States)

    Barrett, Nina; Wholihan, Dorothy

    2016-09-01

    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. PMID:27497022

  19. Palliative care in advanced cancer patients in a tertiary care hospital in Uttarakhand

    OpenAIRE

    Manisha Bisht; Bist, S. S.; Dhasmana, D. C.; Sunil Saini

    2008-01-01

    Aim: Advanced cancer, irrespective of the site of the cancer, is characterized by a number of associated symptoms that impair the quality of life of patients. The management of these symptoms guides palliative care. The present study aims to describe the symptoms and appropriate palliation provided in patients with advanced cancer in a tertiary care hospital in Uttarakhand. Methods: This was an observational study. A total of 100 patients with advanced cancer were included in the study. T...

  20. Trappings of technology: casting palliative care nursing as legal relations.

    Science.gov (United States)

    Larsen, Ann-Claire

    2012-12-01

    Community palliative care nurses in Perth have joined the throng of healthcare workers relying on personal digital assistants (PDAs) to store, access and send client information in 'real time'. This paper is guided by Heidegger's approach to technologies and Habermas' insights into the role of law in administering social welfare programs to reveal how new ethical and legal understandings regarding patient information add to nursing's professional responsibilities. This qualitative research interprets data from interviews with twenty community palliative care nurses about clients' legal rights to informational privacy and confidentiality. It explores nurses' views of their nursing responsibilities regarding clients' legal rights, liability issues, bureaucratic monitoring and enforcement procedures. It concludes that nurses and clients are construed as legal subjects entrenched in legal relations that have magnified since these nurses began using PDAs in 2005/2006. PMID:23134278

  1. Emotion management in children′s palliative care nursing

    Directory of Open Access Journals (Sweden)

    Eryl Zac Maunder

    2008-01-01

    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.

  2. Palliative care in heart failure : a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology

    NARCIS (Netherlands)

    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

    2009-01-01

    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

  3. Exploring the leadership role of the clinical nurse specialist on an inpatient palliative care consulting team.

    Science.gov (United States)

    Stilos, Kalli; Daines, Pat

    2013-03-01

    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. PMID:24863582

  4. Reporting characteristics of cancer pain: A systematic review and quantitative analysis of research publications in palliative care journals

    Directory of Open Access Journals (Sweden)

    Senthil P Kumar

    2011-01-01

    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.

  5. Intrathecal analgesia and palliative care: A case study

    Directory of Open Access Journals (Sweden)

    Naveen S Salins

    2010-01-01

    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.

  6. Modelling the landscape of palliative care for people with dementia: a European mixed methods study

    OpenAIRE

    Iliffe, Steve; Davies, Nathan; Vernooij-Dassen, Myrra; van Riet Paap, Jasper; Sommerbakk, Ragni; Mariani, Elena; Jaspers, Birgit; Radbruch, Lukas; Manthorpe, Jill; Maio, Laura; Haugen, Dagny; Engels, Yvonne

    2013-01-01

    BACKGROUND: Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made.To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe,...

  7. Measuring the diffusion of palliative care in long-term care facilities – a death census

    Directory of Open Access Journals (Sweden)

    Santos-Eggimann Brigitte

    2009-01-01

    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.

  8. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... a patient's and family's experience with illness. Category Science & Technology License Standard YouTube ... we use - Duration: 4:48. Social Care Institute for Excellence 18,290 views 4: ...

  9. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... a patient's and family's experience with illness. Category Science & Technology License Standard ... we use - Duration: 4:48. Social Care Institute for Excellence 21,098 views 4: ...

  10. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... a patient's and family's experience with illness. Category Science & Technology License Standard YouTube License ... My Wishes: An End Of Life Care Story (Patient) - Duration: 27:40. Medway CCG ...

  11. Negotiating the equivocality of palliative care: a grounded theory of team communicative processes in inpatient medicine.

    Science.gov (United States)

    Ledford, Christy J W; Canzona, Mollie Rose; Cafferty, Lauren A; Kalish, Virginia B

    2016-01-01

    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. PMID:26431077

  12. Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

    Directory of Open Access Journals (Sweden)

    Wiener L

    2015-01-01

    Full Text Available Lori Wiener,1,*,# Meaghann Shaw Weaver,2,3,*,# Cynthia J Bell,4,# Ursula M Sansom-Daly,5–7 1Pediatric Oncology Branch, National Cancer Institute, NIH, Bethesda, MD, USA; 2Department of Oncology, Children’s National Health System, Washington, DC, USA; 3Department of Oncology, St Jude Children’s Research Hospital, Memphis, TN, USA; 4College of Nursing, Wayne State University and Hospice of Michigan Institute, Detroit, MI, USA; 5Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia; 6Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Kensington, NSW, Australia; 7Sydney Youth Cancer Service, Sydney Children’s/Prince of Wales Hospitals, Randwick, NSW, Australia *These authors have contributed equally to this work #On behalf of the Pediatric Palliative Care Special Interest Group at Children’s National Health System Abstract: Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs. The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential

  13. An interprofessional education programme for medical learners during a one-month palliative care rotation.

    Science.gov (United States)

    Stilos, Kalli; Daines, Patricia; Moore, Jennifer

    2016-04-01

    Interprofessional education in health care and in palliative care has been the focus of increasing attention in recent years. For health professionals to provide and deliver high-quality palliative care, collaboration and teamwork is required. Palliative care is the ideal service to introduce interprofessional teamwork to medical learners early on in their training. During a 1-month palliative care rotation in Ontario, Canada, medical learners completed a questionnaire seeking their feedback on the interprofessional team model. This article will highlight the results of the questionnaire, how the team promotes a culture of interprofessional collaborative practice, and the supportive structures that foster collaboration among professionals. PMID:27119406

  14. Implementing Outcome Measures Within an Enhanced Palliative Care Day Care Model.

    LENUS (Irish Health Repository)

    Kilonzo, Isae

    2015-04-23

    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.

  15. Palliative care nursing in rural and urban community settings: a comparative analysis.

    Science.gov (United States)

    Kaasalainen, Sharon; Brazil, Kevin; Wilson, Donna M; Willison, Kathleen; Marshall, Denise; Taniguchi, Alan; Williams, Allison

    2011-07-01

    Nurses have key roles in the coordination and delivery of community-based palliative care. The purpose of this study was to examine the differences between rural and urban community nurses' delivery of palliative care services. A survey was distributed to 277 nurses employed by a community agency in Ontario, Canada, and a 60% response rate was obtained. Nurses reported spending 27% of their time providing palliative care. Rural and urban nurses had similar roles in palliative care but rural nurses spent more time travelling and were more confident in their ability to provide palliative care. Both groups of nurses reported moderate job satisfaction and moderate satisfaction with the level of interdisciplinary collaboration in their practice. Several barriers to and facilitators of optimal palliative care provision were identified. The study results provide information about the needs of nurses that practise in these settings and may provide a basis for the development of strategies to address these needs. PMID:21841703

  16. Healthcare professionals' perceptions toward interprofessional collaboration in palliative home care: a view from Belgium.

    Science.gov (United States)

    Pype, Peter; Symons, Linda; Wens, Johan; Van den Eynden, Bart; Stess, Ann; Cherry, Gemma; Deveugele, Myriam

    2013-07-01

    There is a growing need for palliative care, with the majority of palliative patients preferring palliative home care from their general practitioner (GP). GPs join specialized palliative home care teams (PHCTs) to perform this task. GPs' views on this collaboration are not known. This study explores the perceptions and preferences of GPs toward interprofessional collaboration. By employing a grounded theory approach, five focus groups were conducted in Flanders, Belgium with a total of 29 participants (professionals from PHCTs; professionals from organizations who provide training and education in palliative care and GPs who are not connected to either of the aforementioned groups). Analysis revealed that GPs considered palliative home care as part of their job. Good relationships with patients and families were considered fundamental in the delivery of high quality care. Factors influencing effective interprofessional collaboration were team competences, team arrangements (responsibilities and task description) and communication. GPs' willingness to share responsibilities with equally competent team members requires further research. PMID:23181267

  17. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Reserve 5,593 views 12:07 End of Life | Aging Matters | NPT Reports - Duration: 59:01. NPT ... views 59:01 My Wishes: An End Of Life Care Story (Patient) - Duration: 27:40. Medway CCG ...

  18. [Palliative Care for Neurological Intractable Diseases and Home Medical Support].

    Science.gov (United States)

    Yokoyama, Kazumasa; Ogino, Mieko; Ishigaki, Yasunori; Hattori, Nobutaka

    2015-08-01

    Many medical doctors regard the end stage and palliative care of neurological intractable diseases as the point at which aggressive treatment should be interrupted and death is imminent. However, the definition of health by the World Health Organization as the physical, psychological, and social goal to achieve a fully favorable health condition should be revisited. In the real clinical setting, the health condition, as the ability to adapt and self-manage in the face of social, physical, and emotional challenges with the aim to overcome stress (resilience), is dynamic and involves a healthy condition and satisfaction with one's own living. The most important step in palliative therapy that is shared by neurologists is the maintenance of the health status with the help of multi-disciplinary team with the view to improving the quality of life. PMID:26241362

  19. Palliative care in advanced gynecological cancers: Institute of palliative medicine experience

    Directory of Open Access Journals (Sweden)

    Sushmita Pathy

    2008-01-01

    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.

  20. Early palliative care and metastatic non-small cell lung cancer: potential mechanisms of prolonged survival.

    Science.gov (United States)

    Irwin, Kelly E; Greer, Joseph A; Khatib, Jude; Temel, Jennifer S; Pirl, William F

    2013-02-01

    Patients with advanced cancer experience a significant burden of physical symptoms and psychological distress at the end of life, and many elect to receive aggressive cancer-directed therapy. The goal of palliative care is to relieve suffering and promote quality of life (QOL) for patients and families. Traditionally, both the public and medical community have conceptualized the need for patients to make a choice between pursuing curative therapy or receiving palliative care. However, practice guidelines from the World Health Organization and leadership from the oncology and palliative care communities advocate a different model of palliative care that is introduced from the point of diagnosis of life-threatening illness. Early palliative care has been shown to provide benefits in QOL, mood, and health care utilization. Additionally, preliminary research has suggested that in contrast to fears about palliative care hastening death, referral to palliative care earlier in the course of illness may have the potential to lengthen survival, particularly in patients with advanced nonsmall-cell lung cancer. This review summarizes the literature on potential survival benefits of palliative care and presents a model of how early integrated palliative care could potentially influence survival in patients with advanced cancer. PMID:23355404

  1. How integrated are neurology and palliative care services?:Results of a multicentre mapping exercise

    OpenAIRE

    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; Irene J Higginson; OPTCARE Neuro

    2016-01-01

    BACKGROUND: 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.METHODS: 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 ne...

  2. Assessment of distress with physical and psychological symptoms of patients in german palliative care services.

    OpenAIRE

    Neuwöhner, Karl; Lindena, Gabriele

    2011-01-01

    BACKGROUND: Within the framework of the nationwide Hospice and Palliative Care Evaluation (HOPE), the German Basic Documentation for Psycho-oncology (PO-Bado) was used from 2004 to 2006 as an optional module in most participating palliative care services to investigate how patient distress due to symptom burdens in different palliative care settings should be assessed and how professional interventions could be derived. PATIENTS AND METHODS: The distress scores of 3,317 PO-Bado records o...

  3. Improving palliative care in selected settings in England using quality indicators: a realist evaluation

    OpenAIRE

    Iliffe, S.; Davies, N; Manthorpe, J; Crome, P; Ahmedzai, S.; Vernooij-Dassen, M; Engels, Y.

    2016-01-01

    Background: There is a gap between readily available evidence of best practice and its use in everyday palliative care. The IMPACT study evaluated the potential of facilitated use of Quality Indicators as tools to improve palliative care in different settings in England. / Methods: 1) Modelling palliative care services and selecting a set of Quality Indicators to form the core of an intervention, 2) Case studies of intervention using the Quality Indicator set supported by an expert in service...

  4. First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care

    OpenAIRE

    Håkanson, Cecilia; Seiger-Cronfalk, Berit; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

    2014-01-01

    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 Sw...

  5. How integrated are neurology and palliative care services? Results of a multicentre mapping exercise

    OpenAIRE

    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; ,

    2016-01-01

    Background 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. Methods 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 neu...

  6. Improving palliative care in selected settings in England using quality indicators: a realist evaluation

    OpenAIRE

    Iliffe, Steve; Davies, Nathan; Manthorpe, Jill; Crome, Peter; Ahmedzai, Sam H; Vernooij-Dassen, Myrra; Engels, Yvonne

    2016-01-01

    Background: There is a gap between readily available evidence of best practice and its use in everyday palliative care. The IMPACT study evaluated the potential of facilitated use of Quality Indicators as tools to improve palliative care in different settings in England.Methods: 1) Modelling palliative care services and selecting a set of Quality Indicators to form the core of an intervention, 2) Case studies of intervention using the Quality Indicator set supported by an expert in service ch...

  7. Validation of a New Instrument for Self-Assessment of Nurses’ Core Competencies in Palliative Care

    OpenAIRE

    Kari Slåtten; Ove Hatlevik; Lisbeth Fagerström

    2014-01-01

    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...

  8. Using Technology to Create a More Humanistic Approach to Integrating Palliative Care into the Intensive Care Unit.

    Science.gov (United States)

    Cox, Christopher E; Curtis, J Randall

    2016-02-01

    A decade ago, the major obstacles to integration of palliative care into the intensive care unit (ICU) were the limited number of providers trained in palliative care, an immature evidence base, and a lack of appreciation for the importance of palliative care in the ICU. In 2016, the palliative care workforce has expanded markedly and there is growing appreciation of the benefits of palliative care, whether provided by a generalist (intensivist, nurse, social worker) or palliative care specialist. However, there is evidence that the quality of ICU-based palliative care is often suboptimal. A major barrier to more broadly addressing this quality problem is the lack of scalable ICU-based palliative care models that use technology to deliver efficient, collaborative palliative care in the ICU setting to the right patient at the right time. To address these challenges, we first review strengths and limitations of current care models as the basis for our novel conceptual framework that uses the electronic health record as a platform on which external innovations can be built, including: (1) screening for patients at risk for poor outcomes, (2) integrating patient- and family-reported needs, (3) personalizing care, and (4) directing generalist versus specialist triage algorithms. In the approaches considered, we describe current challenges and propose specific solutions that use technology to improve the quality of the human interaction in a stressful, complex environment. PMID:26599829

  9. Parents' Voices Supporting Music Therapy within Pediatric Palliative Care

    Directory of Open Access Journals (Sweden)

    Kathryn Lindenfelser

    2005-11-01

    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.

  10. Organization position statements and the stance of "studied neutrality" on euthanasia in palliative care.

    Science.gov (United States)

    Johnstone, Megan-Jane

    2012-12-01

    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. PMID:22771130

  11. Quality of death: a dimensional analysis of palliative care in the nursing home.

    Science.gov (United States)

    Trotta, Rebecca L

    2007-10-01

    Palliative care in nursing homes is increasingly discussed, investigated, and implemented, yet the term lacks conceptual clarity and definition. Furthermore, the components, process, and outcomes of palliative care as it is delivered in the nursing home have not been clearly articulated. This paper provides a dimensional analysis of palliative care in the nursing home to elucidate the concept and its context and consequences, as portrayed through available literature. As a method, dimensional analysis is rooted in symbolic interaction and grounded theory. As such, it provides a useful tool with which to analyze existing literature on palliative care in the nursing home. In this dimensional analysis, communication is the dominant perspective of palliative care in the nursing home. This analysis demonstrates that the consequences of palliative care in the nursing home are personhood and identity, and quality of death rather than quality of life. These consequences suggest that the focus of palliative care should be on the nursing home resident and the dying experience, rather than quality of life and issues around living that exclude the dying experience and do not acknowledge the personhood and identity of the resident. These elements represent a shift in focus away from one that does not include death, toward the dying experience, and that such a change in focus is necessary to achieve palliative care in the nursing home. Finally, the analysis elucidates potential outcome measures for the study of palliative care in nursing homes and outlines possibilities for further research. PMID:17985968

  12. General practitioners (GPs) and palliative care: perceived tasks and barriers in daily practice.

    NARCIS (Netherlands)

    Groot, C.M.; Vernooy-Dassen, M.J.F.J.; Crul, B.J.P.; Grol, R.P.T.M.

    2005-01-01

    BACKGROUND: General practitioners (GPs) play a crucial part in palliative care. The quality of care can be improved by investigating and addressing barriers perceived by GPs in daily practice. The aim of this study was to investigate GPs' task perception and barriers involved in palliative care. MET

  13. [Resistance from caregivers and doctors to a transfer to palliative care].

    Science.gov (United States)

    Azémard, Alain

    2014-04-01

    Doctors' and caregivers' knowledge, acquired experience and representation of death might favour or delay a patient's transfer to a palliative care unit. The mobile palliative care team, witnessing resistance to a transfer, is in a position to respond thanks to the multidisciplinary nature of the team and the trust established between the different players in the patient's care. PMID:24881246

  14. Emergency calls and need for emergency care in patients looked after by a palliative care team: Retrospective interview study with bereaved relatives

    Directory of Open Access Journals (Sweden)

    Graf Bernhard M

    2008-08-01

    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.

  15. Hospital-based palliative care: A case for integrating care with cure

    Directory of Open Access Journals (Sweden)

    Priya Darshini Kulkarni

    2011-01-01

    Full Text Available The reason that probably prompted Dame Cicely Saunders to launch the palliative care movement was the need to move away from the impersonal, technocratic approach to death that had become the norm in hospitals after the Second World War. Palliative care focuses on relieving the suffering of patients and families. Not limited to just management of pain, it includes comprehensive management of any symptom, which affects the quality of life. Care is optimized through early initiation and comprehensive implementation throughout the disease trajectory. Effective palliative care at the outset can help accelerate a positive clinical outcome. At the end of life, it can enhance the opportunity for the patient and family to achieve a sense of growth, resolve differences, and find a comfortable closure. It helps to reduce the suffering and fear associated with dying and prepares the family for bereavement.

  16. 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

    OpenAIRE

    Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David

    2016-01-01

    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 Pal...

  17. Interventions geared towards strengthening the health system of Namibia through the integration of palliative care

    Science.gov (United States)

    Freeman, Rachel; Luyirika, Emmanuel BK; Namisango, Eve; Kiyange, Fatia

    2016-01-01

    The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation’s public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation.

  18. Narrative palliative care: a method for building empathy.

    Science.gov (United States)

    Stanley, Patricia; Hurst, Marsha

    2011-01-01

    We make meaning of illness, suffering, and death through narrative, by telling a story. In this article, the authors explore narrative and palliative care: how, at the end of life, narratives of patients, caregivers, and clinicians serve to connect to those still living, and how through each telling and listening, we honor and validate the experience of suffering. A discussion of narrative competence and the skills of attention, representation, and affiliation is followed by an outline of the format for a narrative medicine workshop and a detailed analysis of an experiential exercise in close reading and reflective writing. PMID:21391077

  19. Psychosocial issues in palliative care: A review of five cases

    OpenAIRE

    Onyeka, Tonia C

    2010-01-01

    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...

  20. Victoria BGY palliative care model--a new model for the 1990s.

    Science.gov (United States)

    Downing, G M; Braithwaite, D L; Wilde, J M

    1993-01-01

    If, as palliative care practitioners, we ensure that distressing symptoms such as pain, vomiting, dyspnea, confusion, and pre-death restlessness are fully controlled (note "fully"), then most people are deeply appreciative and continue to live until they die, confident that whatever happens, their worth, desires, and comfort are secure. Credibility (Latin, fides dignus) is remaining true and reliable to what was agreed. Patients registering with palliative care generally desire comfort, which can only occur when palliative care physicians and programs are capable and willing to apply all three types of palliation discussed here--the BGY model. PMID:7510798

  1. Implementing a Palliative Care Nurse Leadership Fellowship Program in Uganda.

    Science.gov (United States)

    Downing, Julia; Leng, Mhoira; Grant, Liz

    2016-05-01

    Global oncology and palliative care needs are increasing faster than the available capacity to meet these needs. This is particularly marked in sub-Saharan Africa, where healthcare capacity and systems are limited and resources are stretched. Uganda, a country of 35.6 million people in eastern Africa, faces the challenges of a high burden of communicable disease and a rising number of cases of non-communicable disease, including cancer. The vast majority of patients in Uganda are diagnosed with cancer too late for curative treatment to be an option because of factors like poor access to healthcare facilities, a lack of health education, poverty, and delays resulting from seeking local herbal or other traditional remedies. This article describes an innovative model of nurse leadership training in Uganda to improve the delivery of palliative care. The authors believe this model can be applicable to other low- and middle-income countries, where health resources are constrained and care needs are great.
. PMID:27105201

  2. Evidence of care comprehensiveness in the practice of nursing staff in oncology palliative care

    OpenAIRE

    Marcelle Miranda da Silva; Marléa Chagas Moreira; Joséte Luzia Leite; Alacoque Lorenzini Erdmann

    2014-01-01

    The objective was to identify evidences of comprehensive care in the professional practice of the nursing staff in the context of oncology palliative care. In this descriptive, qualitative study, seven nurses and four nursing technicians were interviewed. Thematic analysis resulted two thematic units: Evidences of comprehensive care in the practice of the nursing professionals and teamwork as the premise of comprehensive care. The nursing staff’s actions are based on communication, converging...

  3. Transmural palliative care by means of teleconsultation: a window of opportunities and new restrictions

    NARCIS (Netherlands)

    J. van Gurp; M. van Selm; E. van Leeuwen; J. Hasselaar

    2013-01-01

    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

  4. Transmural palliative care by means of teleconsultation: a window of opportunities and new restrictions

    NARCIS (Netherlands)

    Gurp, J.L. van; Selm, M. van; Leeuwen, E. van; Hasselaar, J.G.

    2013-01-01

    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

  5. Quality palliative care for cancer and dementia in five European countries: some common challenges

    NARCIS (Netherlands)

    Davies, N.; Maio, L.; Riet Paap, J.C. van; Mariani, E.; Jaspers, B.; Sommerbakk, R.; Grammatico, D.; Manthorpe, J.; Ahmedzai, S.; Vernooij-Dassen, M.J.F.J.; Iliffe, S.

    2014-01-01

    Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia ac

  6. Primary care palliative and supportive care services: Experiences and perceptions of patients with advanced progressive disease and their informal carers

    OpenAIRE

    Hardy, Beth

    2009-01-01

    Palliative care can be defined as the active, holistic care of patients with advanced progressive illness, and incorporates symptom management with psychological, social and spiri-tual care (WHO, 1990). Palliative care is for patients in the advanced stages of illness. Supportive care follows people throughout the process of their disease, from pre-diagnosis, treatment, cure, continuing illness, death and into bereavement. The aim of supportive care is to maximise benefits of treatment and...

  7. Palliative Care Education: Focusing on Care and Not Just Disease | Division of Cancer Prevention

    Science.gov (United States)

    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. These competencies include pain management, good communication skills, and the ability to provide patients with psychosocial and spiritual assessments and to work in interdisciplinary teams in hospitals, as well as through hospice and in nursing homes, he said. |

  8. The power of integration: radiotherapy and global palliative care.

    Science.gov (United States)

    Rodin, Danielle; Grover, Surbhi; Elmore, Shekinah N; Knaul, Felicia M; Atun, Rifat; Caulley, Lisa; Herrera, Cristian A; Jones, Joshua A; Price, Aryeh J; Munshi, Anusheel; Gandhi, Ajeet K; Shah, Chiman; Gospodarowicz, Mary

    2016-07-01

    Radiotherapy (RT) is a powerful tool for the palliation of the symptoms of advanced cancer, although access to it is limited or absent in many low- and middle-income countries (LMICs). There are multiple factors contributing to this, including assumptions about the economic feasibility of RT in LMICs, the logical challenges of building capacity to deliver it in those regions, and the lack of political support to drive change of this kind. It is encouraging that the problem of RT access has begun to be included in the global discourse on cancer control and that palliative care and RT have been incorporated into national cancer control plans in some LMICs. Further, RT twinning programs involving high- and low-resource settings have been established to improve knowledge transfer and exchange. However, without large-scale action, the consequences of limited access to RT in LMICs will become dire. The number of new cancer cases around the world is expected to double by 2030, with twice as many deaths occurring in LMICs as in high-income countries (HICs). A sustained and coordinated effort involving research, education, and advocacy is required to engage global institutions, universities, health care providers, policymakers, and private industry in the urgent need to build RT capacity and delivery in LMICs. PMID:27481320

  9. Validity, reliability and responsiveness to change of the Italian palliative care outcome scale:A multicenter study of advanced cancer patients Cancer palliative care

    OpenAIRE

    COSTANTINI, MASSIMO; Rabitti, Elisa; Beccaro, Monica; Fusco, Flavio; Peruselli, Carlo; La Ciura, Pietro; Valle, Alessandro; Suriani, Cinzia; Berardi, Maria Alejandra; Valenti, Danila; Mosso, Felicita; Morino, Piero; Zaninetta, Giovanni; Tubere, Giorgio; Piazza, Massimo

    2016-01-01

    Background There is an increasing requirement to assess outcomes, but few measures have been tested for advanced medical illness. We aimed to test the validity, reliability and responsiveness of the Palliative care Outcome Scale (POS), and to analyse predictors of change after the transition to palliative care. Methods Phase 1: multicentre, mixed method study comprising cognitive and qualitative interviews with patients and staff, cultural refinement and adaption. Phase 2: consecutive cancer ...

  10. First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care.

    Science.gov (United States)

    Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

    2014-01-01

    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. PMID:25628769

  11. Organization and evaluation of generalist palliative care in a Danish hospital

    DEFF Research Database (Denmark)

    Bergenholtz, H; Hølge-Hazelton, B; Jarlbæk, Lene

    2015-01-01

    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 of...

  12. Oropharyngeal Candidiasis in Palliative Care Patients in Denmark

    DEFF Research Database (Denmark)

    Astvad, Karen; Johansen, Helle Krogh; Høiby, Niels;

    2015-01-01

    BACKGROUND: Oropharyngeal candidiasis (OPC) is a significant cause of morbidity, especially among patients with advanced cancer. The incidence and significance of yeast carriage and OPC in the palliative care setting in Denmark is unknown. The best diagnostic strategy and treatment regimen has...... to be defined. OBJECTIVE: This study evaluated the clinical and microbiological incidence of yeast carriage/OPC and assessed available diagnostic procedures-culture and microscopy. The distribution of Candida species and fluconazole susceptibility was determined. METHODS: Terminal care patients admitted...... recently treated with azoles. CONCLUSIONS: In total, 52% of culture-positive patients harbored at least one isolate with innately or acquired decreased fluconazole susceptibility. Therefore, susceptibility testing appears recommendable for patients with clinical signs of OPC....

  13. Access to palliative care: insights into ground realities post-2014 amendment to NDPS Act.

    Science.gov (United States)

    Rajagopal, M R

    2016-01-01

    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. PMID:26826658

  14. Communication About Sexuality in Advanced Illness Aligns With a Palliative Care Approach to Patient-Centered Care.

    Science.gov (United States)

    Leung, Margaret W; Goldfarb, Shari; Dizon, Don S

    2016-02-01

    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. PMID:26769116

  15. Home care of dying patients. Family physicians' experience with a palliative care support team.

    OpenAIRE

    McWhinney, I R; Stewart, M A

    1994-01-01

    Family physicians were asked about their recent experience with caring for dying patients at home and for their evaluation of a recently established Palliative Care Home Support Team. Ninety-four percent of the respondents had cared for at least one dying patient at home during the previous 2 years. About two thirds felt comfortable, competent, confident, supported, and in control. One quarter felt personally drained by the experience, but almost as many found it personally renewing. Of those...

  16. Impact of teaching session on concepts of palliative care in medical undergraduates.

    Directory of Open Access Journals (Sweden)

    Sirisha Annavarapu

    2016-02-01

    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

  17. Palliative Care: The Relief You Need When You're Experiencing Symptoms of Serious Illness

    Science.gov (United States)

    ... Need When You’re Experiencing the Symptoms of Serious Illness Palliative Care: Improving quality of life when ... Dealing with the symptoms of any painful or serious illness is difficult. However, special care is available ...

  18.  Cancer palliation in primary care - what is good and bad?

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn

     CANCER PALLIATION IN PRIMARY CARE -WHAT IS GOOD AND BAD?MA Neergaard, MD, specialist in general medicine, PhD student*F Olesen, general practitioner, Dr.Med.Sci., professor* J Soendergaard, general practitioner, senior researcher, PhD*AB Jensen, MD, consultant in oncology, PhD** *The Research Unit...... for General Practice, University of Aarhus, Vennelyst Boulevard 6, 8000 Århus C, DK.**Department of Oncology / The Palliative Team, Aarhus Hospital, DK.Background. Palliative care for cancer patients is an important part of a general practitioner's work. Although every general practitioner is...... frequently 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...

  19. Integrated palliative care in the Spanish context: a systematic review of the literature

    OpenAIRE

    Garralda, Eduardo; Hasselaar, Jeroen; Carrasco, José Miguel; Van Beek, Karen; Siouta, Naouma; Csikos, Agnes; Menten, Johan; Centeno, Carlos

    2016-01-01

    Background Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study is to identify literature on IPC in the Spanish context, either in cancer or other advanced chronic diseases. Methods Systematic review of the literature about IPC published in Spain between 1995 and...

  20. Team meetings in specialist palliative care: Asking questions as a strategy within interprofessional interaction

    OpenAIRE

    Arber, A

    2008-01-01

    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...

  1. Palliative care in neonatal neurology: robust support for infants, families and clinicians.

    Science.gov (United States)

    Lemmon, M E; Bidegain, M; Boss, R D

    2016-05-01

    Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles into the care of infants with neurological injury. Here, we review data regarding neonatal symptom management, prognostic uncertainty, decision making, communication and parental support for neonatal neurology patients and their families. PMID:26658120

  2. Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians

    Directory of Open Access Journals (Sweden)

    Agra Yolanda

    2011-05-01

    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

  3. Palliative care communication curriculum: what can students learn from an unfolding case?

    Science.gov (United States)

    Goldsmith, Joy; Wittenberg-Lyles, Elaine; Shaunfield, Sara; Sanchez-Reilly, Sandra

    2011-06-01

    Limited attention to palliative care communication training is offered to medical students. In this work, we pursued unfolding case responses and what they indicated about student tendencies to use palliative care communication as well as what medical students can learn from their own reflective practice about palliative care. Findings showed an overwhelming trend for students to avoid palliative care communication or inclusion of topics including advance directives, place of care, family support, and dying. Instead, students relied heavily on the SPIKES protocol, communication that was strategically vague and ambiguous, and discussions that centered on specialty care and referral. In reflecting on their own case study responses, students noted an absence of direct communication about prognosis, no coordination of care, late hospice entry, and patient pain resulting from communication inefficacies. Future research should focus on the development of formal and adaptive curriculum structures to address these communication needs. PMID:21071434

  4. The challenge of providing palliative care to terminally ill prison inmates in the UK.

    Science.gov (United States)

    Wood, Felicity Juliette

    2007-03-01

    Terminally ill prison inmates have a right to all aspects of health care including palliative care provision. However, there are numerous difficulties in providing palliative care to high-security prisoners in the UK. Local community hospices may be reluctant to admit terminally ill prisoners and therefore initiatives must be established to provide appropriate palliative care within the prison itself. Dying prisoners need companionship and to be shown respect and compassion to avoid feelings of loneliness and hopelessness. Inmate volunteers can provide an invaluable source of support and friendship for the terminally ill prisoner, helping to improve quality of life. PMID:17505406

  5. Palliative care for the elderly - developing a curriculum for nursing and medical students

    Directory of Open Access Journals (Sweden)

    Bongartz Maren

    2010-09-01

    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.

  6. A modified systematic review of research evidence about education for pre-registration nurses in palliative care

    OpenAIRE

    Bassah, N.; Seymour, J; K. Cox

    2014-01-01

    Background: We undertook a modified systematic review of research regarding educational approaches to and effectiveness of pre-registration palliative care nursing, to inform the development of a short course in palliative care for pre-registration nursing students in Cameroon. The aim of this review was to examine educational approaches applied to pre-registration palliative care nursing education and their effectiveness, and to discuss implications for the development of palliat...

  7. Infomarkers for Transition to Goals Consistent with Palliative Care in Dying Patients

    Science.gov (United States)

    Yao, Yingwei; Stifter, Janet; Ezenwa, Miriam O.; Lodhi, Muhammad; Khokhar, Ashfaq; Ansari, Rashid; Keenan, Gail M.; Wilkie, Diana J.

    2015-01-01

    Objective Electronic health records (EHRs) may contain infomarkers that identify patients near the end of life for whom it would be appropriate to shift care goals to palliative care. Discovery and use of such infomarkers could be used to conduct effectiveness research that ultimately could help to reduce the monumental costs for dying care. Our aim was to identify changes in the plans of care that represented infomarkers, which signaled the transition of care goals from non-palliative care goals to those consistent with palliative care. Methods Using an existing electronic health record database generated during a two-year, longitudinal study of 9 diverse medical-surgical units from 4 Midwest hospitals and a known group approach, we evaluated the patient care episodes for 901 patients who died (mean age=74.5±14.6 years). We used ANOVA and Tukey’s post-hoc tests to compare patient groups. Results We identified 11 diagnoses, including Death Anxiety and Anticipatory Grieving, whose addition to the care plan, some of which also occurred with removal of non-palliative care diagnoses, represent infomarkers of transition to palliative care goals. There were four categories of patients, those who had: no infomarkers on plans (n=507); infomarkers added on the admission plan (n=194); infomarkers added on a post admission plan (minor transitions, n=109), and infomarkers added and non-palliative care diagnoses removed on a post admission plan (major transition, n=91). Age, length of stay, and pain outcomes differed significantly for these four categories of patients. Significance of Results EHRs contain pertinent infomarkers that if confirmed in future studies could be used for timely referral to palliative care for improved focus on comfort outcomes and to identify palliative care subjects from data repositories for to conduct big data research, comparative effectiveness studies, and health services research. PMID:25711431

  8. [Personal and dignified death. The role of pastoral care in palliative medicine].

    Science.gov (United States)

    Breit-Keßler, Susanne

    2016-03-01

    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. PMID:26983110

  9. Knowledge of the residents at King Abdul-Aziz University Hospital (KAAUH about palliative care

    Directory of Open Access Journals (Sweden)

    Sultan H Alamri

    2012-01-01

    Full Text Available Background: Palliative care is a rapidly growing subspecialty that aims at improving the quality of life and relieving suffering associated with life threatening disease. Despite its rapid growth and huge demand, the knowledge of health care professionals on palliative care remains inadequate. Objective: This study aims to determine the knowledge of residents at King Abdul-Aziz University Hospital (KAAUH on palliative care. Materials and Methods: Through a cross-sectional design, all residents in the hospital were invited to complete a two-part self-administered questionnaire in June 2010. The first part of the questionnaire included variables describing the socio-demographic characteristics and educational background, and the second part developed by palliative care education initiative at Dalhousie University in Canada in 2000 had 25 items on the knowledge of palliative care. Results : Of the 80 residents 65 (81% responded, the overwhelming majority of whom were Saudis (92.3% with an equal representation of males and females. The mean age of the participants was 29.1 ± 2.4 years. Less than one-third (29.2% indicated that they had previous didactic education on palliative care. The percentage of right answers on items reflecting knowledge on palliative care accounted for 29.9% ± 9.9%. No statistically significant difference was found in the level of knowledge among the residents according to their demographics or graduation and training characteristics. Conclusion: Resident physicians enrolled in postgraduate programs have suboptimal knowledge of basic palliative care. Substantial efforts should be made to incorporate a palliative care module into the theoretical and practical training of medical students and resident physicians.

  10. Psychosocial issues in palliative care: A review of five cases

    Directory of Open Access Journals (Sweden)

    Tonia C Onyeka

    2010-01-01

    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.

  11. What Proportion of Terminally Ill and Dying People Require Specialist Palliative Care Services?

    Directory of Open Access Journals (Sweden)

    Donna M. Wilson

    2014-01-01

    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.

  12. Integrating Speech-Language Pathology Services in Palliative End-of-Life Care

    Science.gov (United States)

    Pollens, Robin D.

    2012-01-01

    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…

  13. [The present and future of community/home-based palliative care in Taiwan].

    Science.gov (United States)

    Ueng, Ruey-Shiuan; Hsu, Su-Hsuan; Shih, Chih-Yuan; Huang, Sheng-Jean

    2015-04-01

    In Taiwan, the Department of Health (DOH) has implemented regulations and policies related to hospice and palliative care since 1995. Taiwan is the first country in Asia to have a Natural Death Act, promulgated in 2000. Although recognition of the need for palliative care in non-cancer terminally ill patients is increasing, at present, the needs of these patients are often not met. Moreover, while a majority of the population prefers to die at home, the percentage of patients who die in the home setting remains small. The palliative care system should be adjusted to improve the accessibility and continuity of care based on the needs of patients. Therefore, the Jin-Shan Branch of the National Taiwan University Hospital has run a pilot community palliative care service model since 2012. National Health Insurance reimbursement was introduced in 2014 for community-based palliative care services. Establishing a formal system of community-based palliative care should be encouraged in order to improve the quality of care at the end of life and to allow more patients to receive end-of-life care and die in their own communities. This system will require that skilled nurses provide discharge planning, symptoms control, end-of-life communications, social-resources integration, and social-support networks in order to achieve a high quality of end-of-life care. PMID:25854944

  14. A Comparative Study on the Palliative Care in Romania and France

    OpenAIRE

    Mariana ENACHE; Rodica GRAMMA; Silvia DUMITRAS; Stefana MOISA; Catalin IOV; Beatrice IOAN

    2013-01-01

    The palliative care has old tradition, as the single support and relief of suffering in terminally ill patients form, until the release of antibiotics and the development of modern medical technologies, investigation, diagnosis and treatment. In the 1960s the palliative care was officially recognized as a medical field, focused on the psycho-emotional and spiritual aspects without neglecting, however, the physical aspects of care. Further evolution differed on a country basis.The health insur...

  15. "It Was Definitely Very Different": An evaluation of palliative care teaching to medical students using a mixed methods approach.

    Science.gov (United States)

    Brand, Alison H; Harrison, Amanda; Kumar, Koshila

    2015-01-01

    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. PMID:26399087

  16. Symptom severity of patients with advanced cancer in palliative care unit: longitudinal assessments of symptoms improvement

    OpenAIRE

    Tai, Shu-Yu; Lee, Chung-Yin; Wu, Chien-Yi; Hsieh, Hui-ya; Huang, Joh-Jong; Huang, Chia-Tsuan; Chien, Chen-Yu

    2016-01-01

    Background This study assessed the symptom severity of patients with advanced cancer in a palliative care unit and explored the factors associated with symptom improvement. Methods This study was conducted in a palliative care unit in Taiwan between October 2004 and December 2009. Symptom intensity was measured by the “Symptom Reporting Form”, and graded on a scale of 0 to 4 (0 = none, and 4 = extreme). These measures were assessed on the 1st, 3rd, 5th, and 7th Day in the palliative care unit...

  17. The Use of Emergency Medication Kits in Community Palliative Care: An Exploratory Survey of Views of Current Practice in Australian Home-Based Palliative Care Services.

    Science.gov (United States)

    Bullen, Tracey; Rosenberg, John P; Smith, Bradley; Maher, Kate

    2015-09-01

    Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely manner. The use of emergency medication kits (EMKs) can provide such timely symptom relief. The purpose of this study was to conduct a survey of a local service to examine views on medication management before and after the implementation of an EMK and to conduct a nationwide prevalence survey examining the use of EMKs in Australia. Most respondents from community palliative care services indicated that EMKs were not being supplied to palliative care patients but believed such an intervention could improve patient care. PMID:24871345

  18. Sustainable practice improvements: impact of the Comprehensive Advanced Palliative Care Education (CAPCE) program.

    Science.gov (United States)

    Harris, Diane; Hillier, Loretta M; Keat, Nancy

    2007-01-01

    This paper describes an education program designed to improve palliative care practice through the development of workplace hospice palliative care resources (PCRs), and its impact on knowledge transfer and longer-term changes to clinical practice. Evaluation methods included pre- and post-program questionnaires, and a survey of learners' (n=301) perceptions of program learning strategies. Interviews (n=21) were conducted with a purposeful sample of PCRs and representatives from their work sites. Ratings of the sessions indicated that they were relevant to learners' clinical practice. At follow up, the majority of learners (83%) continued to serve as PCRs. Many positive effects were identified, including enhanced pain and symptom management, staff education, and development of care policies and guidelines. Management support, particularly the prioritization of palliative care and staff development, were factors facilitating sustained implementation. These findings highlight the importance of multimodal learning strategies and supportive work environments in the development of PCRs to enhance palliative care practice. PMID:18251444

  19. Palliative care in advanced dementia; A mixed methods approach for the development of a complex intervention

    Directory of Open Access Journals (Sweden)

    Tookman Adrian

    2008-07-01

    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

  20. The Illness Experience: Palliative Care Given the impossibility of Healing.

    Science.gov (United States)

    Dantas, Margarida Maria Florêncio; Amazonas, Maria Cristina Lopes de Almeida

    2016-06-01

    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. PMID:27384275

  1. Addressing Palliative Sedation during Expert Consultation: A Descriptive Analysis of the Practice of Dutch Palliative Care Consultation Teams.

    Directory of Open Access Journals (Sweden)

    Patrick Hoek

    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.

  2. Patterns of care and course of symptoms in palliative radiotherapy. A multicenter pilot study analysis

    Energy Technology Data Exchange (ETDEWEB)

    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

    2011-08-15

    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

  3. Patterns of care and course of symptoms in palliative radiotherapy. A multicenter pilot study analysis

    International Nuclear Information System (INIS)

    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

  4. Reporting characteristics of cancer pain: A systematic review and quantitative analysis of research publications in palliative care journals

    OpenAIRE

    Kumar, Senthil P

    2011-01-01

    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/ suppo...

  5. [Importance of Anesthesiologists in the Work of a Palliative Care Team].

    Science.gov (United States)

    Hozumi, Jun; Sumitani, Masahiko

    2016-03-01

    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. PMID:27097502

  6. The basis, ethics and provision of palliative care for dementia: A review.

    Science.gov (United States)

    Mahin-Babaei, Fariba; Hilal, Jamal; Hughes, Julian C

    2016-01-01

    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. PMID:26421475

  7. Developing leadership in rural interprofessional palliative care teams.

    Science.gov (United States)

    Hall, Pippa; Weaver, Lynda; Handfield-Jones, Richard; Bouvette, Maryse

    2008-01-01

    This project brought together community-based practitioners and academics to develop and deliver interventions designed to enhance the leadership abilities of the designated leaders of seven rural/small town-based palliative care teams. Members of these community-based teams have already gained recognition for their teams' leadership and service delivery in their communities. All of the teams had worked closely with most members of the academic team prior to this project. The team members participated in a needs assessment exercise developed by the Sisters of Charity of Ottawa Health Service and University of Ottawa academic team. Results of the needs assessment identified leadership qualities that had contributed to their success, as well as their needs to further enhance their individual leadership qualities. The team effort, however, was the most important factor contributing to the success of their work. The interventions developed to address the identified needs had to be adapted creatively through the collaborative efforts of both the community and academic teams. The educational interventions facilitated the integration of learning at the individual and community level into the busy work schedules of primary health care providers. PMID:19005956

  8. Dyspnea management in Palliative home care: A case series in Malaysia

    Directory of Open Access Journals (Sweden)

    Rojanasak Thongkhamcharoen

    2012-01-01

    Full Text Available Managing dyspnea at home is a challenging task. Although a competent palliative home care team can assist a patient to live at home with better pain control, dyspnea is usually not as well managed. In the Asian context, there are few research studies in dyspnea management in palliative home care. This paper aims to illustrate the cultural context that has an impact on dyspnea management at home and the assessment and management of dyspnea in a community palliative care setting in Malaysia. This paper reports on a study of 5 dyspneic patients suffering from both cancer-related and non-cancer-related dyspnea. Its focus is on a unique Asian cultural belief system that affects communication about prognosis and the role of family in palliative home care. In addition, this paper also describes dyspnea assessment, the barriers to morphine use, benzodiazepine prescription, oxygen therapy, and nonpharmacologic intervention in this center.

  9. Palliative Care Eases Symptoms, Enhances Lives | NIH MedlinePlus the Magazine

    Science.gov (United States)

    ... cancer, heart disease, lung disease, kidney failure, AIDS, cystic fibrosis and other diseases, experience physical symptoms and emotional distress. Sometimes these are related to the patient's medical treatment. You may want to consider palliative care if ...

  10. The need for increased access to pediatric hospice and palliative care.

    Science.gov (United States)

    Jones, Brian W

    2011-01-01

    Pediatric hospice and palliative care continue to be an underutilized model of care. There is much confusion over the differences between hospice and palliative care. Nurses and physicians continue to need specialized training regarding end-of-life care and the pediatric population. Children and their families may needlessly be suffering during the dying process. Many barriers exist that prevent its use among medical professionals. This article discusses some of these barriers and strategies to reduce them. Recent changes in health care law will allow both curative and hospice care to be provided at the same time. PMID:21841410

  11. Cooperating with a palliative home-care team: expectations and evaluations of GPs and district nurses

    DEFF Research Database (Denmark)

    Goldschmidt, Dorthe; Groenvold, Mogens; Johnsen, Anna Thit;

    2005-01-01

    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...

  12. The comparative palliative care needs of those with heart failure and cancer patients.

    LENUS (Irish Health Repository)

    O'Leary, Norma

    2012-02-01

    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.

  13. Extending emotion and decision-making beyond the laboratory: The promise of palliative care contexts.

    Science.gov (United States)

    Ferrer, Rebecca A; Padgett, Lynne; Ellis, Erin M

    2016-08-01

    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 PMID:27018611

  14. Awareness, understanding and attitudes of Italians regarding palliative care

    Directory of Open Access Journals (Sweden)

    Franca Benini

    2011-01-01

    Full Text Available There are numerous difficulties encountered in the diffusion of palliative care (PC in developed countries. A correct and widespread awareness of PC among the general public represents an important factor for its enhanced diffusion and use. The aim of this study is to verify the level of awareness of PC among Italians and their perception of the needs of patients with incurable illness. A random sample of 1897 adult subjects, aged 18 to 74 years, representative of the Italian population, was interviewed after stratification by gender, age (6 strata, education (3 levels, geographic area of residency (4 areas and town of residency (4 dimensions. 59.4% of those interviewed had heard of PC, but only 23.5% of them believed that they had an adequate or precise idea of what PC is; 27% of them did not know or had a mistaken idea about the nature of PC. The most accepted perception was that PC alleviates pain and improves quality-of-life. The principal concerns attributed to incurable patients were: fear of suffering and of death, and the principal needs were perceived as: relief from pain and physical suffering. The primary needs of the family were identified in: medical and nursing care at home, followed by: care provided by volunteers and psychological support. The most appropriate care-setting for these patients was indicated as their home, possibly with the support of professional carers. In the case of children, the main concern indicated was that of being "separated" from family, friends, home and toys. Only 45.2% of interviewees thought that they knew a person who had experienced PC. In conclusion, the awareness of the Italian population of PC is scarce and often incorrect. In order to achieve a greater diffusion and better use of PC in our country, this awareness needs to be improved by appropriate intervention.

  15. Narratives of 'terminal sedation', and the importance of the intention-foresight distinction in palliative care practice.

    Science.gov (United States)

    Douglas, Charles D; Kerridge, Ian H; Ankeny, Rachel A

    2013-01-01

    The moral importance of the 'intention-foresight' distinction has long been a matter of philosophical controversy, particularly in the context of end-of-life care. Previous empirical research in Australia has suggested that general physicians and surgeons may use analgesic or sedative infusions with ambiguous intentions, their actions sometimes approximating 'slow euthanasia'. In this paper, we report findings from a qualitative study of 18 Australian palliative care medical specialists, using in-depth interviews to address the use of sedation at the end of life. The majority of subjects were agnostic or atheistic. In contrast to their colleagues in acute medical practice, these Australian palliative care specialists were almost unanimously committed to distinguishing their actions from euthanasia. This commitment appeared to arise principally from the need to maintain a clear professional role, and not obviously from an ideological opposition to euthanasia. While some respondents acknowledged that there are difficult cases that require considered reflection upon one's intention, and where there may be some 'mental gymnastics,' the nearly unanimous view was that it is important, even in these difficult cases, to cultivate an intention that focuses exclusively on the relief of symptoms. We present four narratives of 'terminal' sedation--cases where sedation was administered in significant doses just before death, and may well have hastened death. Considerable ambiguities of intention were evident in some instances, but the discussion around these clearly exceptional cases illustrates the importance of intention to palliative care specialists in maintaining their professional roles. PMID:21726263

  16. The role and significance of nurses in managing transitions to palliative care: a qualitative study

    OpenAIRE

    Kirby, Emma; Broom, Alex; Good, Phillip

    2014-01-01

    Objectives Nurses are generally present, and often influential, in supporting patient and family acceptance of medical futility and in assisting doctors in negotiating referral to palliative care. Yet the specificities of the nursing role and how nurses may contribute to timely and effective referrals is not well understood. This study aimed to systematically explore hospital-based nurses’ accounts of the transition to palliative care, and the potential role of nurses in facilitating more eff...

  17. Living in the face of death: Studies on palliative care in upper GI cancer patients

    OpenAIRE

    Uitdehaag, Madeleen

    2012-01-01

    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 uniform management policy aiming at improvement of quality of life (QoL) of these patients and their families, we decided to study different interventions with effect on this primary aim. The introd...

  18. Acupuncture and Related Therapies for Symptom Management in Palliative Cancer Care

    OpenAIRE

    Lau, Charlotte H. Y.; Wu, Xinyin; Vincent C. H. Chung; Liu, Xin; Hui, Edwin P.; Cramer, Holger; Lauche, Romy; Wong, Samuel Y. S.; Lau, Alexander Y.L.; Sit, Regina S. T.; Eric T. C. Ziea; Ng, Bacon F. L.; Wu, Justin C. Y.

    2016-01-01

    Abstract Available systematic reviews showed uncertainty on the effectiveness of using acupuncture and related therapies for palliative cancer care. The aim of this systematic review and meta-analysis was to summarize current best evidence on acupuncture and related therapies for palliative cancer care. Five international and 3 Chinese databases were searched. Randomized controlled trials (RCTs) comparing acupuncture and related therapies with conventional or sham treatments were considered. ...

  19. The case for home based telehealth in pediatric palliative care: a systematic review

    OpenAIRE

    Bradford Natalie; Armfield Nigel R; Young Jeanine; Smith Anthony C

    2013-01-01

    Abstract Background Over the last decade technology has rapidly changed the ability to provide home telehealth services. At the same time, pediatric palliative care has developed as a small, but distinct speciality. Understanding the experiences of providing home telehealth services in pediatric palliative care is therefore important. Methods A literature review was undertaken to identify and critically appraise published work relevant to the area. Studies were identified by searching the ele...

  20. Use of dependency and prioritization tools by clinical nurse specialists in palliative care: an exploratory study.

    LENUS (Irish Health Repository)

    Bracken, Mairéad

    2011-12-01

    The principal aim was to assess the utility of three needs assessment\\/dependency tools for use in community-based palliative care services. Specific objectives were to assess a sample of patients receiving specialist palliative care community nursing using these tools, to assess the predictive ability of each tool, and to explore the utility of prioritizing and measuring patient dependency from a clinical nurse specialist (CNS) perspective.

  1. Validation of the Prognosis in Palliative Care Study Predictor Models in Terminal Cancer Patients

    OpenAIRE

    Kim, Eun-Shin; Lee, Jung-Kwon; Kim, Mi-Hyun; Noh, Hye-Mi; Jin, Yeong-Hyeon

    2014-01-01

    Background Prognosis in Palliative Care Study (PiPS) predictor models were developed in 2011 to estimate the survival of terminal cancer patients in the United Kingdom. The aim of this study was to validate the PiPS model for terminal cancer patients in Korea, and evaluate its value in clinical practice. Methods This study included 202 advanced cancer patients who were admitted to the cancer hospital's palliative care ward from November 2011 to February 2013. On admission, physicians recorded...

  2. Palliative care professionals’ willingness to perform euthanasia or physician assisted suicide

    OpenAIRE

    Zenz, Julia; Tryba, Michael; Zenz, Michael

    2015-01-01

    Background Euthanasia and physician assisted suicide (PAS) are highly debated upon particularly in the light of medical advancement and an aging society. Little is known about the professionals’ willingness to perform these practices particularly among those engaged in the field of palliative care and pain management. Thus a study was performed among those professionals. Methods An anonymous questionnaire was handed out to all participants of a palliative care congress and a pain symposium in...

  3. Impact of an oncology palliative care clinic on access to home care services.

    Science.gov (United States)

    Jang, Raymond W; Burman, Debika; Swami, Nadia; Kotler, Jennifer; Banerjee, Subrata; Ridley, Julia; Mak, Ernie; Bryson, John; Rodin, Gary; Le, Lisa W; Zimmermann, Camilla

    2013-08-01

    Home care (HC) is important for patients with cancer as performance status declines. Our study of 1224 patients at a Canadian cancer center examined the impact of an oncology palliative care clinic (OPCC) on HC referral. The HC referral frequency was calculated before and after the first OPCC consultation, in total and according to performance status (Palliative Performance Scale, PPS). Characteristics associated with HC referral were investigated. After the first OPCC consultation, there was an increase in HC referral from 39% (477 of 1224; 49% of those with PPS ≤60) to 69% (841 of 1224; 88% of those with PPS ≤60). Factors independently associated with HC referral were poor PPS (P < .001) and older age (P = .003). Thus OPCC involvement resulted in markedly increased HC referrals, particularly for older patients with poor performance status. PMID:22777408

  4. Health care costs in end-of-life and palliative care: the quest for ethical reform.

    Science.gov (United States)

    Jennings, Bruce; Morrissey, Mary Beth

    2011-01-01

    Health reform in the United States must address both access to medical services and universal insurance coverage, as well as health care cost containment. Uncontrolled health care costs will undermine improvements in access and coverage in the long-run, and will also be detrimental to other important social programs and goals. Accordingly, the authors offer an ethical perspective on health care cost control in the context of end-of-life and palliative care, an area considered by many to be a principal candidate for cost containment. However, the policy and ethical challenges may be more difficult in end-of-life care than in other areas of medicine. Here we discuss barriers to developing high quality, cost effective, and beneficial end-of-life care, and barriers to maintaining a system of decision making that respects the wishes and values of dying patients, their families, and caregivers. The authors also consider improvements in present policy and practice-such as increased timely access and referral to hospice and palliative care; improved organizational incentives and cultural attitudes to reduce the use of ineffective treatments; and improved communication among health professionals, patients, and families in the end-of-life care planning and decision-making process. PMID:22150176

  5. Palliative and end-of-life care for people living with dementia in care homes: part 2.

    Science.gov (United States)

    Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne

    2016-06-29

    This article, the second of two, provides healthcare practitioners with an overview of best practice in palliative and end-of-life care, including nutrition, hydration, oral hygiene and pain management. Communication and spiritual care are discussed, as well as care after death. Providing support and education for families is an important aspect of palliative and end-of-life care. Care home nurses should ensure that the person living with dementia is at the centre of decision making, and provide care that is inclusive of their needs and wishes. 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. PMID:27353937

  6. [Intensive care - palliative care. Contradiction or supplement? Considerations on ethical issues and principles in the treatment of dying patients].

    Science.gov (United States)

    Müller-Busch, H C

    2001-12-01

    Over the last five decades the progress in intensive care has extended the limitations of controlling the process of dying and given doctors more influence in determining the time of death. More recently, palliative care has emerged as a new approach in response to the ethical dilemmas of modern medicine, which accepts that dying is a natural process that should not be hastened or delayed through medical interventions. While in Germany in 1999 more than 50 000 people have died in intensive care units, only a small number of 8000 patients have died in palliative care. In comparison to the highly-developed intensive care sector, palliative care is a much neglected area. The public debate following the legalisation of euthanasia in the Netherlands has highlighted concerns in Germany that intensive care has the potential of inappropriately prolonging life and raised expectations about the alternative therapies offered by palliative care. Doctors in intensive care and in palliative care face similar ethical dilemmas, though with a different weighting: the dilemma between professional judgement and patient autonomy, between traditional medical roles and patient self-determination and the dilemma of extending the span of life at the expense of quality of life. The approach of palliative care with its strong focus on alleviating the suffering of the terminally ill, has influenced the ethical debate of dying in intensive care. Although intensive care and palliative care have different aims and priorities, there are common problems of decision-making which could benefit from a shared orientation and interdisciplinary debate. Both the interpretation of a dying parent's will as well as withdrawing or withholding treatment in patients who are unable to decide for themselves should not merely be guided by the debate on active and passive euthanasia, but rather take into account the appropriateness or inappropriateness of medical actions in the specific situation. PMID:11743668

  7. Timely identification of palliative patients and anticipatory care planning by GPs: practical application of tools and a training programme

    OpenAIRE

    Thoonsen, Bregje; Groot, Marieke; Verhagen, Stans; van Weel, Chris; Vissers, Kris; Engels, Yvonne

    2016-01-01

    Background Palliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients’ needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient’s future, and consulted a palliative care consultant to fine-tune the care plan. We...

  8. Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives

    Directory of Open Access Journals (Sweden)

    Fischbach Thomas

    2010-06-01

    Full Text Available Abstract Background Non-specialist palliative care, as it is delivered by general practitioners, is a basic component of a comprehensive palliative care infrastructure for adult patients with progressive and far advanced disease. Currently palliative care for children and adolescents is recognized as a distinct entity of care, requiring networks of service providers across different settings, including paediatricians working in general practice. In Germany, the medical home care for children and adolescents is to a large extent delivered by general paediatricians working in their own practice. However, these are rarely confronted with children suffering from life-limiting diseases. The aim of this study was therefore to examine potential barriers, incentives, and the professional self-image of general paediatricians with regard to paediatric palliative care. Methods Based on qualitative expert interviews, a questionnaire was designed and a survey among general paediatricians in their own practice (n = 293 was undertaken. The survey has been developed and performed in close cooperation with the regional professional association of paediatricians. Results The results showed a high disposition on part of the paediatricians to engage in palliative care, and the majority of respondents regarded palliative care as part of their profile. Main barriers for the implementation were time restrictions (40.7% and financial burden (31.6%, sole responsibility without team support (31.1%, as well as formal requirements such as forms and prescriptions (26.6%. Major facilitations were support by local specialist services such as home care nursing service (83.0%, access to a specialist paediatric palliative care consultation team (82.4%, as well as an option of exchange with colleagues (60.1%. Conclusions Altogether, the high commitment to this survey reflects the relevance of the issue for paediatricians working in general practice. Education in basic palliative

  9. A qualitative evaluation of the impact of a palliative care course on preregistration nursing students’ practice in Cameroon

    OpenAIRE

    Bassah, Nahyeni; Cox, Karen; Seymour, Jane

    2016-01-01

    Background Current evidence suggests that palliative care education can improve preregistration nursing students’ competencies in palliative care. However, it is not known whether these competencies are translated into students’ practice in the care of patients who are approaching the end of life. This paper seeks to contribute to the palliative care evidence base by examining how nursing students in receipt of education report transfer of learning to practice, and what the barriers and facil...

  10. Palliative care awareness among Indian undergraduate health care students: A needs-assessment study to determine incorporation of palliative care education in undergraduate medical, nursing and allied health education

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    Sakshi Sadhu

    2010-01-01

    Conclusion: The outcomes of the study showed that the basic knowledge of palliative care among students was inadequate, and students are unprepared and uncertain in their approach of delivering end-of-life care.

  11. [Key ethic discussions in hospice/palliative care].

    Science.gov (United States)

    Jusić, Anica

    2008-12-01

    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

  12. Role of radiation therapy in palliative care of the patient with cancer.

    Science.gov (United States)

    Lutz, Stephen T; Jones, Joshua; Chow, Edward

    2014-09-10

    Radiotherapy is a successful, time-efficient, well-tolerated, and cost-effective intervention that is crucial for the appropriate delivery of palliative oncology care. The distinction between curative and palliative goals is blurred in many patients with cancer, requiring that treatments be chosen on the basis of factors related to the patient (ie, poor performance status, advanced age, significant weight loss, severe comorbid disease), the cancer (ie, metastatic disease, aggressive histology), or the treatment (ie, poor response to systemic therapy, previous radiotherapy). Goals may include symptom relief at the site of primary tumor or from metastatic lesions. Attention to a patient's discomfort and transportation limitations requires hypofractionated courses, when feasible. Innovative approaches include rapid response palliative care clinics as well as the formation of palliative radiotherapy specialty services in academic centers. Guidelines are providing better definitions of appropriate palliative radiotherapy interventions, and bone metastases fractionation has become the first radiotherapy quality measure accepted by the National Quality Forum. Further advances in the palliative radiation oncology subspecialty will require integration of education and training between the radiotherapy and palliative care specialties. PMID:25113773

  13. Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial

    Directory of Open Access Journals (Sweden)

    Thoonsen Bregje

    2011-11-01

    Full Text Available Abstract Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815

  14. Palliative care for cancer patients in a primary health care setting:Bereaved relatives' experience, a qualitative group interview study

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn; Olesen, Frede; Jensen, Anders Bonde;

    2008-01-01

    Background: Knowledge about the quality and organisation of care to terminally ill cancer patients with a relatives' view in a primary health care setting is limited. The aim of the study is to analyse experiences and preferences of bereaved relatives to terminally ill cancer patients in a primary...... care setting to explore barriers and facilitators for delivery of good palliative home care. Methods: Three focus group interviews with fourteen bereaved relatives in Aarhus County, Denmark. Results: Three main categories of experience were identified: 1) The health professionals' management, where a...... need to optimize was found. 2) Shared care, which was lacking. 3) The relatives' role, which needs an extra focus. Conclusion: Relatives experience insufficient palliative care mainly due to organizational and cultural problems among professionals. Palliative care in primary care in general needs...

  15. Structuring a palliative care service in Brazil: experience report

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    João Batista Santos Garcia

    2014-07-01

    Full Text Available BACKGROUND AND OBJECTIVES: in Brazil, palliative care (PC is not properly structured and that reality transforms this theme in a public health problem; therefore, initiatives become relevant in this context. This paper aims to share the experience that occurred in an oncology referral hospital in the State of Maranhão and present initiatives that helped in the development of PC Service. EXPERIENCE REPORT: the hospital had an outpatient Pain and PC Service, but without specialized beds. The terminally ill patients stayed in common wards, which caused much unrest. A sensitization process was initiated in the hospital through initiatives, such as a photo contest called Flashes of Life and a ward called Room of Dreams, designed in partnership with the architecture course at the Universidade Estadual do Maranhão. The process culminated in the granting of wards to the PC and in the commitment of the Foundation, sponsor of the hospital, to run the project. CONCLUSION: this experience was a reproducible local initiative for the establishment of PC in a cancer hospital. Local initiatives are valuable in Brazil because they favor a significant number of patients and show its effectiveness in practice to governments and society. To structure a PC service, it is essential to establish priorities that include the assignment of drugs for management of symptoms, humanization, multidisciplinarity, sensitization and education of professionals.

  16. An evaluation of aromatherapy massage in palliative care.

    Science.gov (United States)

    Wilkinson, S; Aldridge, J; Salmon, I; Cain, E; Wilson, B

    1999-09-01

    The use of complementary therapies, such as massage and aromatherapy massage, is rising in popularity among patients and healthcare professionals. They are increasingly being used to improve the quality of life of patients, but there is little evidence of their efficacy. This study assessed the effects of massage and aromatherapy massage on cancer patients in a palliative care setting. We studied 103 patients, who were randomly allocated to receive massage using a carrier oil (massage) or massage using a carrier oil plus the Roman chamomile essential oil (aromatherapy massage). Outcome measurements included the Rotterdam Symptom Checklist (RSCL), the State-Trait Anxiety Inventory (STAI) and a semi-structured questionnaire, administered 2 weeks postmassage, to explore patients' perceptions of massage. There was a statistically significant reduction in anxiety after each massage on the STAI (P essential oils appears to reduce levels of anxiety. The addition of an essential oil seems to enhance the effect of massage and to improve physical and psychological symptoms, as well as overall quality of life. PMID:10659113

  17. The Role of Play in Children’s Palliative Care

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    Sue Boucher

    2014-10-01

    Full Text Available Play is the universal language of childhood and the time and opportunity to play is every child’s right. The role of play as a vehicle for communication, a tool for distraction and its value in the holistic development of a normal child is without dispute. The role and value of play increase proportionately when a child is made more vulnerable through illness or disability. Despite this, providing time and opportunities to play can be overlooked or considered to be of little importance or relevance when the focus of the adult carers is the amelioration of clinical symptoms of the illness and on lessening the psychological impact the illness may have on the child. This paper outlines the role and the value of play as an integral component in the provision of palliative care for children with chronic, life-threatening and life-limiting conditions. It will show how providing appropriate equipment, sufficient time and relevant play opportunities not only improves the very sick child’s psychological wellbeing, but also allows the child to cast aside the confines and restrictions imposed upon them by their illness and for a few golden moments to be nothing more than a child at play.

  18. The Role of Play in Children’s Palliative Care

    Science.gov (United States)

    Boucher, Sue; Downing, Julia; Shemilt, Rise

    2014-01-01

    Play is the universal language of childhood and the time and opportunity to play is every child’s right. The role of play as a vehicle for communication, a tool for distraction and its value in the holistic development of a normal child is without dispute. The role and value of play increases proportionately when a child is made more vulnerable through illness or disability. Despite this, providing time and opportunities to play can be overlooked or considered to be of little importance or relevance when the focus of the adult carers is the amelioration of clinical symptoms of the illness and on lessening the psychological impact the illness may have on the child. This paper outlines the role and the value of play as an integral component in the provision of palliative care for children with chronic, life-threatening and life-limiting conditions. It will show how providing appropriate equipment, sufficient time and relevant play opportunities not only improves the very sick child’s psychological wellbeing, but also allows the child to cast aside the confines and restrictions imposed upon them by their illness and for a few golden moments to be nothing more than a child at play.

  19. Palliative care services for Indian migrants in Australia: Experiences of the family of terminally Ill patients

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    Sujatha Shanmugasundaram

    2009-01-01

    Full Text Available Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups.

  20. Preparing the Pediatric Dentist for Palliative and End-of-life Care.

    Science.gov (United States)

    Sarvas, Elise W; Schwantes, Scott A; Karp, Jeffrey M

    2016-01-01

    Pediatric dentists are the primary providers of dental homes for children with life-threatening and complex chronic conditions. These children are increasingly living at home and seeking health care in community-based settings, including dental offices. Pediatric dentists may feel ill prepared to assume the roles and responsibilities of a pediatric palliative care provider due to limited education and training during dental school and residency; however, they should be sensitive to the palliative care needs of children and families. The purpose of this clinical article was to highlight palliative care scenarios in pediatric dentistry and provide actionable resources to empower pediatric dentists to gather health care information, make informed ethical decisions, promote patient- and family-centered care, and prepare dentists and their dental teams for episodes of death and bereavement when providing a dental home to patients with life-threatening and complex chronic conditions. PMID:27557917

  1. Barriers and facilitators to palliative care of patients with chronic heart failure in Germany: a study protocol

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    Stefan Köberich

    2015-07-01

    Full Text Available Background. Despite its high prevalence, similar symptoms and symptom burden, people suffering from chronic heart failure receive less palliative care than patients with malignant diseases. Internationally, numerous barriers to palliative care of patients with chronic heart failure are known, however, there are no credible data regarding barriers and facilitators to palliative care of people suffering from chronic heart failure available for Germany. Design and Methods. Tripartite study. First part of this study evaluates health care providers’ (physicians and nurses perceived barriers and facilitators to palliative care of patients with chronic heart failure using a qualitative approach. At least 18 persons will be interviewed. In the second part, based on the results of part one, a questionnaire about barriers and facilitators to palliative care of patients with chronic heart failure will be designed and applied to at least 150 physicians and nurses. In the last part a classic Delphi method will be used to develop specific measures to improve the palliative care for chronic heart failure patients. Expected Impact for Public Health. The results of this study will help to understand why patients with heart failure are seldom referred to palliative care and will provide solutions to overcome these barriers. Developed solutions will be the first step to improve palliative care in patients with heart failure in Germany. In addition, the results will help health care providers in other countries to take action to improve palliative care situations for heart failure patients.

  2. Protocol on the constipation in an oncology palliative care unit

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    Montserrat Cordero Ponce

    2008-07-01

    Full Text Available Constipation is a problem relatively common even in healthy people, mainly in the western world, influenced mainly by the nutritional diets and the diminution of the physical activity. It is a symptom of difficult valuation by its subjective nature and the difficulty to establish a normality pattern.The incidence is high. It is observed in a 70 - 80% of the patients in terminal situation, the 40 - 50% of the patients with disease outpost and in 90% of the patients dealing with opiate.As nurses in of a palliative care unit we detected the high number of patients which they present/display the symptom and the time that takes in its diagnose and treatment, increasing the incidence-appearance of fecal impactación and intestinal obstruction. It is one of the symptoms that worry to our patients more.We take too frequently the “rectal measures,” being more painful and a little shameful for these patients, instead of using preventive measures, precocious oral treatment and continuous evaluation of the symptom. The knowledge that these patients have of the constipation is in many deficient cases. In order to be able to educate and to take care of to the oncology terminal patient in terminal state with constipation it is essential that we know its physiopathology, causes and complications. Also we will deepen in the most suitable treatment according to the consistency, the effort that the patient must make when defecating and the symptoms that presents/displays, trying that the treatment is customized and individual, although starting off of a previous protocol of performance decided by the health professionals who are going to treat the patient.

  3. Does the Culture of Modern Day Palliative Care Social Work Leave Room for Leadership?

    Science.gov (United States)

    Davidson, Jason

    2016-01-01

    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 care social work. However, it relates to much broader themes including the history, politics and culture of this profession and the requirements for leadership on the part of social work in the broader contexts of health and social care.

  4. [Nursing in palliative care to children and adolescents with cancer: integrative literature review].

    Science.gov (United States)

    da Costa, Thailly Faria; Ceolim, Maria Filomena

    2010-12-01

    Pediatric palliative care is a challenge for nursing because it requires emotional balance and knowledge about its specific features. This study is an integrative literature review that aims to identify nursing actions in palliative care for children and adolescents with cancer, considering peculiarities of the disease and dying process. The review was performed by searching for articles indexed in Biblioteca Virtual da Adolescência (Adolec), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS) and PubMed databases from January 2004 till May 2009. From 29 references found, six met inclusion criteria. Results show teamwork, home care, pain management, dialogue, family support and particularities of childhood cancer fundamental tools for nursing in palliative care. The complexity of care in this situation requires solidarity, compassion, support and relieving suffering. PMID:21805890

  5. Improving medical graduates' training in palliative care: advancing education and practice

    Directory of Open Access Journals (Sweden)

    Head BA

    2016-02-01

    Full Text Available Barbara A Head,1 Tara J Schapmire,1 Lori Earnshaw,1 John Chenault,2 Mark Pfeifer,1 Susan Sawning,3 Monica A Shaw,3 1Division of General Internal Medicine, Palliative Care and Medical Education, University of Louisville School of Medicine, 2Kornhouser Health Sciences Library, University of Louisville, 3Undergraduate Medical Education Office, University of Louisville School of Medicine, Louisville, KY, USA Abstract: The needs of an aging population and advancements in the treatment of both chronic and life-threatening diseases have resulted in increased demand for quality palliative care. The doctors of the future will need to be well prepared to provide expert symptom management and address the holistic needs (physical, psychosocial, and spiritual of patients dealing with serious illness and the end of life. Such preparation begins with general medical education. It has been recommended that teaching and clinical experiences in palliative care be integrated throughout the medical school curriculum, yet such education has not become the norm in medical schools across the world. This article explores the current status of undergraduate medical education in palliative care as published in the English literature and makes recommendations for educational improvements which will prepare doctors to address the needs of seriously ill and dying patients. Keywords: medical education, palliative care, end-of-life care

  6. Pharmacological treatments for fatigue associated with palliative care: executive summary of a Cochrane Collaboration systematic review

    Science.gov (United States)

    Mochamat; Cuhls, Henning; Peuckmann‐Post, Vera; Minton, Ollie; Stone, Patrick; Radbruch, Lukas

    2016-01-01

    Abstract Background In palliative care patients, fatigue can be severely debilitating and is often not counteracted with rest, thereby impacting daily activity and quality of life. Further complicating issues are the multidimensionality, subjective nature and lack of a consensus definition of fatigue. The review aimed to evaluate the efficacy of pharmacological treatments for fatigue in palliative care, with a focus on patients at an advanced stage of disease, including patients with cancer and other chronic diseases. Methods We considered randomized controlled trials concerning adult palliative care with a focus on pharmacological treatment of fatigue compared with placebo, application of two drugs, usual care or a non‐pharmacological intervention. The primary outcome had to be non‐specific fatigue (or related terms such as asthenia). We searched the CENTRAL, MEDLINE, PsycINFO and EMBASE, and a selection of cancer journals up to 28 April 2014. Two review authors independently assessed trial quality and extracted the data. Results We screened 1645 publications of which 45 met the inclusion criteria. In total, we analysed data from 18 drugs and 4696 participants. There was a very high degree of statistical and clinical heterogeneity in the trials. Meta‐analysis of data was possible for modafinil, pemoline, and methylphenidate. Conclusions Due to the limited evidence, we cannot recommend a specific drug for the treatment of fatigue in palliative care patients. Some drugs, which may be beneficial for the treatment of fatigue associated with palliative care such as amantadine, methylphenidate, and modafinil, should be further researched. PMID:27066315

  7. The palliative care movement in India: Another freedom struggle or a silent revolution?

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    Cherian Koshy

    2009-01-01

    Full Text Available The message of palliative care in India has become a movement in several parts of India in a short span of time. The past two decades have seen palpable changes in the mindset of health care providers, and policy makers with respect to the urgency in providing palliative care. With a population of over a billion spread over a vast geo-political mosaic, the reach and reliability of palliative care programmes may appear staggering and insurmountable. Nonetheless we have reasons to be proud in that we have overcome several hurdles and is presently in a ′consolidation mode′. It is only a matter of time before the ′aam admi′ has access to good palliative care. Easing narcotic licensing procedures, creation of standard operating procedures for morphine availability and the passing of the ′Palliative Care Policy′ by the Government of Kerala are commendable milestones. We are today having more of ′silver linings′ and less of ′dark clouds′.

  8. Providing Palliative Care in a Swedish Support Home for People Who Are Homeless.

    Science.gov (United States)

    Håkanson, Cecilia; Sandberg, Jonas; Ekstedt, Mirjam; Kenne Sarenmalm, Elisabeth; Christiansen, Mats; Öhlén, Joakim

    2016-07-01

    Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions. PMID:25994318

  9. Usefulness of Palliative Care to Complement the Management of Patients on Left Ventricular Assist Devices.

    Science.gov (United States)

    Luo, Nancy; Rogers, Joseph G; Dodson, Gwen C; Patel, Chetan B; Galanos, Anthony N; Milano, Carmelo A; O'Connor, Christopher M; Mentz, Robert J

    2016-09-01

    Within the last decade, advancements in left ventricular assist device therapy have allowed patients with end-stage heart failure (HF) to live longer and with better quality of life. Like other life-saving interventions, however, there remains the risk of complications including infections, bleeding episodes, and stroke. The candidate for left ventricular assist device therapy faces complex challenges going forward, both physical and psychological, many of which may benefit from the application of palliative care principles by trained specialists. Despite these advantages, palliative care remains underused in many advanced HF programs. Here, we describe the benefits of palliative care, barriers to use within HF, and specific applications to the integrated care of patients on mechanical circulatory support. PMID:27474339

  10. Palliative and end-of-life decision-making in dementia care.

    Science.gov (United States)

    Mitchell, Gary

    2015-11-01

    This paper will highlight some of the pertinent issues associated with palliative and end-of-life decision-making in relation to dementia. To achieve this, the author will consider why there is disparity in relation to shared decision-making practices across non-malignant disease through exploration of models of disease trajectories. The author will then go on to highlight how people living with dementia, a non-malignant disease, have a human right to receive palliative care and be an active agent in the shared decision-making process about their future and care preferences. The challenges of shared decision-making in dementia care will be discussed along with some implications for nursing practice. The aim of this paper is to provide nurses, practising across all settings, with an overview of the fundamental importance of timely palliative and end-of-life shared decision-making in dementia care. PMID:26619237

  11. Challenges to participation in paediatric palliative care research: a review of the literature.

    Science.gov (United States)

    Tomlinson, Deborah; Bartels, Ute; Hendershot, Eleanor; Constantin, Julie; Wrathall, Glynis; Sung, Lillian

    2007-07-01

    It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is often challenging. While conducting a study that involved parents of children receiving palliative or end-of-life care, the authors found that there were particular challenges to recruiting these parents. This comprehensive review of the literature aims to address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care. Key elements, that may maximize completion of research and a more representative sample, are also discussed. These elements include obtaining the opinions on study design and interview script from experienced families and maximizing the partnership between health care professionals and the research team. PMID:17901103

  12. End-of-Life Decisions and Palliative Care in Advanced Heart Failure.

    Science.gov (United States)

    Meyers, Deborah E; Goodlin, Sarah J

    2016-09-01

    Advanced heart failure (HF) therapies are focused on extending life and improving function. In contrast, palliative care is a holistic approach that focuses on symptom alleviation and patients' physical, psychosocial, and spiritual needs. HF clinicians can integrate palliative care strategies by incorporating several important components of planning and decision-making for HF patients. Future care planning (FCP) for HF patients should incorporate the basic tenets of shared decision-making (SDM). These include understanding the patient's perspective and care preferences, articulating what is medically feasible, and integrating these considerations into the overall care plan. Use of defined triggers for FCP can stimulate important patient-caregiver conversations. Guidelines advocate an annual review of HF status and future care preferences. Advance directives are important for any individual with a chronic, life-limiting illness and should be integrated into FCP. Nevertheless, use of advance directives by HF patients is extremely low. Consideration of illness trajectories and risk-scoring tools might facilitate prognostication and delivery of appropriate HF care. Decisions about heart transplantation or left ventricular assist device implantation should include planning for potential complications associated with these therapies. Such decisions also should include a discussion of palliative management, as an alternative to intervention and also as an option for managing symptoms or adverse events after intervention. Palliative care, including FCP and SDM, should be integrated into the course of all patients with advanced HF. Clinicians who provide HF care should acquire the skills necessary for conducting FCP and SDM discussions. PMID:27568873

  13. The palliative care needs of patients with stage 3 and 4 HIV infection

    Directory of Open Access Journals (Sweden)

    C Jameson

    2008-01-01

    Conclusions : Medical problems with poor symptom control were the commonest problems, followed by socioeconomic issues related to no income, poor living conditions and fears for the future of their children. Spiritual and psychological issues were surprisingly less of a problem possibly because the immediacy and severity of the demands of day-to-day survival. As a result of the needs identified among these patients, it became apparent that a palliative care ward catering to these needs was needed. The guiding principles in the development of this ward were the need for privacy, for a teamwork approach and for meticulous medical care, all of which underpin good palliative care.

  14. Symptoms in patients receiving palliative care: a study on patient-physician encounters in general practice.

    OpenAIRE

    Borgsteede, S.D.; Deliens, L.; Beentjes, B.; Schellevis, F.; Stalman, W.A.B.; van Eijk, J T. M; Wal, G. van der

    2007-01-01

    Most people with an incurable disease prefer to stay and die at home, cared for by their general practitioner (GP). This paper aims at describing the prevalence of symptoms in patients receiving palliative care at home. Within the framework of a nation wide survey of general practice in the Netherlands, GPs received a questionnaire for all patients who died within the 1-year survey period to determine whether patients received palliative care (n = 2,194). The response rate was 73% (n = 1,608)...

  15. Palliative care for all? A review of the evidence in community hospitals.

    Science.gov (United States)

    Steers, Julie; Brereton, Louise; Ingleton, Christine

    2007-08-01

    The provision of palliative care in the UK has traditionally focused on people with cancer. People who are elderly, live in rural areas or have diagnoses other than cancer often have difficulty accessing palliative care services. Community hospitals could be important for those groups currently under-served. A literature review was conducted to determine the role played by community hospitals in the provision of palliative care in the U.K. Papers were identified using a keyword search of six electronic databases and hand search of five journals. Fifteen papers were identified according to inclusion and exclusion criteria. Findings indicate that many community hospitals in the UK already have the resources to counter inequalities in access to general palliative care. Much of the evidence uses quantitative methods based on small or non-representative samples and retrospective data collection approaches. Insufficient information about the populations involved meant that findings could not be fully interpreted. More prospective research using qualitative methods involving patients, carers and nurses is required to fully understand the complexities of providing palliative care in this setting. PMID:18018819

  16. The use of bedside ultrasound and community-based paracentesis in a palliative care service

    Directory of Open Access Journals (Sweden)

    Landers A

    2014-06-01

    Full Text Available INTRODUCTION: There is little information, particularly in New Zealand, on the use of ultrasound to enhance clinical decision-making in a specialist palliative care service. Technological advances have resulted in increasingly portable, user-friendly ultrasound machines that can be used in the home setting to offer convenient access to this treatment option. AIM: To evaluate the clinical use of portable ultrasonography in the management of abdominal ascites in a community palliative care service. METHODS: Patients referred to the Nurse Maude Hospice and Palliative Care Service requiring assessment for abdominal ascites over 12 months were scanned using a newly purchased handheld ultrasound machine. The patients had a variety of diagnoses; the most common diagnosis was ovarian cancer. RESULTS: Forty-one ultrasound scans performed for 32 patients to assess for ascites drainage were recorded. Fluid was identified in 19 assessments and drainage undertaken in 17. Over half the scans were completed at home, allowing nine procedures to be performed safely and conveniently, which reduced time spent at the local hospital. There were no major complications. DISCUSSION: Ultrasonography is a tool that has not previously been utilised in palliative care locally, but has significant potential patient benefits. This novel use of technology also highlighted potential cost savings to the patient and health system, which may be beneficial to other palliative care services in New Zealand.

  17. [Assessment of the spiritual needs of patients in palliative care].

    Science.gov (United States)

    Hajnová Fukasová, E; Bužgová, R; Feltl, D

    2015-01-01

    The appraisal and the right diagnostics of all needs and problems of patients, including the spiritual needs, are unavoidable for increase of the quality of the all-embracing nursing care. In the case of satisfying of the needs of the patients, it is important to have view the person as a unity of thebody and the soul. Identification and satisfying of the spiritual needs are not uncomplicated; moreover, spirituality does not have a target--ed and clear definition. In the palliative care, the solution and saturation of spiritual needs have a great priority, and it can be the key aspect of psychological activity. Also, medical experts are becoming aware of the meaning of spirituality as the part of psychological contentment more and more. Smaller importance is attached to measurement of spiritual needs, and in many medical institutions ends at the case history with the questions: "Are you a believer?", "Do you have any spiritual needs?". Spirituality and religion are very personal matters of every human. Many patients turn to religion to find answers to difficult questions while others find support through the spiritual beliefs outside the scope of organized religion. Mistaking of meanings of the spirituality and religionism can lead to many misunderstandings. The basic condition for the right diagnostics and satisfaction of spiritual needs are the definition of the used terms and using of standardized measurement devices in the clinical praxis. The target of summarizing study was to define the term of spirituality, to describe a lot of measurement devices these are suitable for the evaluation of human spiritual needs. For methodology for acquiring of the results of research works that are concerned with the questions of spiritual needs in case of the incurable patients, the following databases were used (2005-2013): EBSCO, Bibliographia Medica Čechoslovaca, Google Scholar, Solen - www.solen.cz, Profese on-line as the source of the data. The choice of studies were

  18. General practitioners' use and experiences of palliative care services: a survey in south east England

    Directory of Open Access Journals (Sweden)

    Higginson Irene J

    2008-11-01

    Full Text Available Abstract Background The role of the General Practitioner (GP is central to community palliative care. Good liaison between the different professionals involved in a patient's care is extremely important in palliative care patients. In cases where GPs have previously been dissatisfied with palliative services, this may be seen as a barrier to referral when caring for other patients. The aim of this survey is to investigate the use and previous experiences of GPs of two palliative care services, with particular emphasis on barriers to referral and to explore issues surrounding the GP's role in caring for palliative patients. Methods Design: Descriptive postal survey of use and experience of palliative care services with particular emphasis on barriers to referral. Setting: One Primary Care Trust (PCT, south London, England, population 298,500. Subjects: 180 GPs in the PCT, which is served by two hospice services (A&B. Results An overall questionnaire response rate of 77% (138 was obtained, with 69% (124 used in analysis. Over 90% of GPs were satisfied with the palliative care services over the preceding two years. Two areas of possible improvement emerged; communication and prescribing practices. GPs identified some patients that they had not referred, most commonly when patients or carers were reluctant to accept help, or when other support was deemed sufficient. Over half of the GPs felt there were areas where improvement could be made; with clarification of the rules and responsibilities of the multi disciplinary team being the most common. The majority of GPs were working, and want to work with, the specialist services as part of an extended team. However, a greater number of GPs want to hand over care to the specialist services than are currently doing so. Conclusion A large number of GPs were happy with the service provision of the palliative care services in this area. They suggested that 3 out of 4 terminally ill patients needed specialist

  19. Piloting the role of a pharmacist in a community palliative care multidisciplinary team: an Australian experience

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    Box Margaret

    2011-10-01

    Full Text Available Abstract Background While the home is the most common setting for the provision of palliative care in Australia, a common problem encountered here is the inability of patient/carers to manage medications, which can lead to misadventure and hospitalisation. This can be averted through detection and resolution of drug related problems (DRPs by a pharmacist; however, they are rarely included as members of the palliative care team. The aim of this study was to pilot a model of care that supports the role of a pharmacist in a community palliative care team. A component of the study was to develop a cost-effective model for continuing the inclusion of a pharmacist within a community palliative care service. Methods The study was undertaken (February March 2009-June 2010 in three phases. Development (Phase 1 involved a literature review; scoping the pharmacist's role; creating tools for recording DRPs and interventions, a communication and education strategy, a care pathway and evidence based patient information. These were then implemented in Phase 2. Evaluation (Phase 3 of the impact of the pharmacist's role from the perspectives of team members was undertaken using an online survey and focus group. Impact on clinical outcomes was determined by the number of patients screened to assess their risk of medication misadventure, as well as the number of medication reviews and interventions performed to resolve DRPs. Results The pharmacist screened most patients (88.4%, 373/422 referred to the palliative care service to assess their risk of medication misadventure, and undertook 52 home visits. Medication reviews were commonly conducted at the majority of home visits (88%, 46/52, and a variety of DRPs (113 were detected at this point, the most common being "patient requests drug information" (25%, 28/113 and "condition not adequately treated" (22%, 25/113. The pharmacist made 120 recommendations in relation to her interventions. Fifty percent of online

  20. Who Receives Home-Based Perinatal Palliative Care: Experience from Poland

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    Aleksandra Korzeniewska-Eksterowicz

    2013-01-01

    Full Text Available Context. The current literature suggests that perinatal palliative care (PPC programs should be comprehensive, initiated early, and integrative. So far there have been very few publications on the subject of home-based PC of newborns and neonates. Most publications focus on hospital-based care, mainly in the neonatal intensive care units. Objective. To describe the neonates and infants who received home-based palliative care in Lodz Region between 2005 and 2011. Methods. A retrospective review of medical records. Results. 53 neonates and infants were admitted to a home hospice in Lodz Region between 2005 and 2011. In general, they are a growing group of patients referred to palliative care. Congenital diseases (41% were the primary diagnoses; out of 53 patients 16 died, 20 were discharged home, and 17 stayed under hospice care until 2011. The most common cause of death (56% was cardiac insufficiency. Neurological symptoms (72% and dysphagia (58% were the most common clinical problems. The majority of children (45% had a feeding tube inserted and were oxygen dependent (45%; 39 families received psychological care and 31 social supports. Conclusions. For terminally ill neonates and infants, perinatal palliative care is an option which improves the quality of their lives and provides the family with an opportunity to say goodbye.

  1. Integrating Palliative Care Into the Care of Patients With Advanced Lung Cancer.

    Science.gov (United States)

    Kapo, Jennifer M; Akgün, Kathleen M

    2015-01-01

    Lung cancer is the leading cause of death due to malignancy. Although lung cancer mortality has been decreasing in recent years, it remains substantially higher than other causes of cancer death. Median survival for patients with locally advanced non-small cell lung cancer, defined as lung cancer involving regional lymph nodes, is estimated to be approximately 10 to 17 months, and median survival for patients with metastatic disease is only 6 to 9 months. In addition, patients with advanced lung cancer often experience debilitating symptoms and poor quality of life. Pain, dyspnea, and fatigue are most frequently reported and affect at least 65% of patients with advanced lung cancer. Given this burden of symptoms and high mortality, patients and their families facing a diagnosis of advanced lung cancer are in need of support. Palliative care, with its focus on addressing the emotional, physical, and spiritual sources of suffering utilizing the expertise of an interdisciplinary team, can provide this comprehensive support. This review describes the role of supportive and palliative care integrated into the treatment of patients with a diagnosis of advanced lung cancer with sections focused on the evaluation and treatment of pain and dyspnea, approaches to challenging communication tasks, and the support of caregivers who care for patients with advanced lung cancer. PMID:26389769

  2. Appraisal of cooperation with a palliative care case manager by general practitioners and community nurses: a cross-sectional questionnaire study.

    OpenAIRE

    Plas, A.G.M. van der; Onwuteaka-Philipsen, B.D.; Vissers, K.C.; Deliens, L.; Jansen, W.J.J.; Francke, A.L.

    2016-01-01

    Aims: To investigate how general practitioners and community nurses value the support that they receive from a nurse case manager with expertise in palliative care, whether they think the case manager is helpful in realizing appropriate care and what characteristics of the patient and case management are associated with this view. Background: For sustainable palliative care in an ageing society, basic palliative care is provided by generalists and specialist palliative care is reserved for co...

  3. Hospital based palliative care in sub-Saharan Africa; a six month review from Malawi

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    Jane Bates M

    2011-07-01

    Full Text Available Abstract Background The World Health Organisation recognises the importance of palliative care in an African setting. Despite this services are often patchy and inconsistent, and many operate at health centre and/or community level. Few reports from hospital based palliative care services in sub-Saharan Africa exist in the current literature. As part of its activities Tiyanjane Clinic has been providing hospital based palliative care to patients at Queen Elizabeth Central Hospital, a large government tertiary referral institution, in the Southern region of Malawi since 2003, caring for patients with HIV, cancer and other non-malignant palliative diagnoses. Methods A retrospective review of case notes for all in-patients seen by Tiyanjane Clinic over a six month period (April-Sept 2009 was undertaken. Results A total of 177 patients were seen, for whom 137 case notes were available (77%. 58% of patients were male, 42% female. The average age of patients was 39.1 years (range 15-92 years. 54% of patients were HIV positive, with 34% on ARV drugs at the time of care. 42% of patients had HIV related diagnoses, including AIDS defining malignancies, 48% had (non AIDS related cancers and 9% had other palliative diagnoses. The mean age of patients with HIV related diagnoses was 34 years, for cancer patients it was 48 years. Pain was the most commonly reported symptom (74%, with 56% of patients requiring oral morphine. The mean daily dose of morphine was 30 mg/day (range 9-100 mg. 65% of patients were discharged home, 26% of patients died during admission. Conclusions The palliative care population in this setting is relatively young, especially among patients with HIV related diagnoses. HIV and cancer are the main diagnostic groups. Pain is the most commonly reported symptom, with oral morphine frequently required. Health workers require access to and knowledge of oral morphine in order to provide appropriate assistance to patients under their care.

  4. Classification of a palliative care population in a comprehensive cancer centre

    DEFF Research Database (Denmark)

    Benthien, Kirstine Skov; Nordly, Mie; Videbæk, Katja; Kurita, Geana Paula; von der Maase, Hans; Timm, Helle; Simonsen, Mette Kildevæld; Johansen, Christoffer; Sjøgren, Per

    2016-01-01

    PURPOSE: The purposes of the present study were to classify the palliative care population (PCP) in a comprehensive cancer centre by using information on antineoplastic treatment options and to analyse associations between socio-demographic factors, cancer diagnoses, treatment characteristics and...... receiving specialist palliative care (SPC). METHODS: This is a cross-sectional screening study of patients with cancer in the Department of Oncology, Rigshospitalet, Copenhagen University Hospital for 6 months. Patients were assessed to be included in the DOMUS study: a randomised controlled trial of...... accelerated transition to SPC at home (NCT01885637). The PCP was classified as patients with incurable cancer and limited or no antineoplastic treatment options. Patients with performance status 2-4 were further classified as the essential palliative care population (EPCP). RESULTS: During the study period...

  5. [Bioethics and nutrition in adult patients with cancer in palliative care].

    Science.gov (United States)

    Benarroz, Monica de Oliveira; Faillace, Giovanna Borges Damião; Barbosa, Leandro Augusto

    2009-09-01

    Cancer constitutes a major group of chronic diseases and is the second leading cause of death in the developed countries. Palliative care proposes to offer comprehensive support to control symptoms and improve quality of life for patients and their families. Nutrition is an important tool in palliative care, helping patients with their physical, psychological, and social issues and promoting comfort and quality of life. However, in the context of palliative care, nutritional support rarely achieves its role of fully recovering and assuring nutritional status. At this point, the nutritionist must consider the individual patient's needs, preferences, and eating habits, which are essential both for controlling symptoms and assuring satisfaction and comfort. The impossibility of conventionally applying established management and the development of a new perception of the patient often raise dilemmas for professional nutritionists. PMID:19750375

  6. Addressing the Concerns Surrounding Continuous Deep Sedation in Singapore and Southeast Asia: A Palliative Care Approach.

    Science.gov (United States)

    Krishna, Lalit Kumar Radha

    2015-09-01

    The application of continuous deep sedation (CDS) in the treatment of intractable suffering at the end of life continues to be tied to a number of concerns that have negated its use in palliative care. Part of the resistance towards use of this treatment option of last resort has been the continued association of CDS with physician-associated suicide and/or euthanasia (PAS/E), which is compounded by a lack clinical guidelines and a failure to cite this treatment under the aegis of a palliative care approach. I argue that reinstituting a palliative care-inspired approach that includes a holistic review of the patient's situation and the engagement of a multidisciplinary team (MDT) guided by clearly defined practice requirements that have been lacking amongst many prevailing guidelines will overcome prevailing objections to this practice and allow for the legitimization of this process. PMID:26173777

  7. The case for home based telehealth in pediatric palliative care: a systematic review

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    Bradford Natalie

    2013-02-01

    Full Text Available Abstract Background Over the last decade technology has rapidly changed the ability to provide home telehealth services. At the same time, pediatric palliative care has developed as a small, but distinct speciality. Understanding the experiences of providing home telehealth services in pediatric palliative care is therefore important. Methods A literature review was undertaken to identify and critically appraise published work relevant to the area. Studies were identified by searching the electronic databases Medline, CINAHL and Google Scholar. The reference list of each paper was also inspected to identify any further studies. Results There were 33 studies that met the inclusion criteria of which only six were pediatric focussed. Outcome measures included effects on quality of life and anxiety, substitution of home visits, economic factors, barriers, feasibility, acceptability, satisfaction and readiness for telehealth. While studies generally identified benefits of using home telehealth in palliative care, the utilisation of home telehealth programs was limited by numerous challenges. Conclusion Research in this area is challenging; ethical issues and logistical factors such as recruitment and attrition because of patient death make determining effectiveness of telehealth interventions difficult. Future research in home telehealth for the pediatric palliative care population should focus on the factors that influence acceptance of telehealth applications, including goals of care, access to alternative modes of care, perceived need for care, and comfort with using technology.

  8. Content analysis of legal acts and the determination of the directions of optimization of palliative care in modern Russia

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    Yerugina M.V.

    2015-12-01

    Full Text Available The article presents the author's analysis of the normative documents of the Russian Federation necessary for providing palliative care. According to the authors regulatory — legal support of palliative medical care to the population allows to plan and to develop this kind of assistance in Russia. To ensure the availability of palliative care it is necessary to have scientific and methodological basis and to develop a general classification of the states under which the palliative care is needed and should be organized. The procedure for medical care must be brought into conformity with the mentioned above classification. The authors consider the trends of medicalisation of palliative care in Russia in the context of dysfunctional practices of the social institute of Public Health.

  9. Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada.

    Science.gov (United States)

    Guerriere, Denise; Husain, Amna; Zagorski, Brandon; Marshall, Denise; Seow, Hsien; Brazil, Kevin; Kennedy, Julia; Burns, Sheri; Brooks, Heather; Coyte, Peter C

    2016-07-01

    Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have

  10. Developing a web-based information resource for palliative care: an action-research inspired approach

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    Gliddon Terry

    2007-09-01

    Full Text Available Abstract Background General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website 1. Method The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197 scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166. Results Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers. Conclusion Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to

  11. Specialist pediatric palliative care prescribing practices: A large 5-year retrospective audit

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    Anuja Damani

    2016-01-01

    Full Text Available Introduction: There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary, dosing schedules, and prescription guidelines. This study is a retrospective audit of prescribing practices of a specialist palliative care service situated in a tertiary cancer center. Methods: A total of 1135 medication records of children receiving specialist pediatric palliative care services were audited for 5 years (2010-2014 to evaluate prescribing practices in children with advanced cancer. Results: A total of 51 types of drugs were prescribed with an average of 4.2 drugs per prescription. 66.9% of the prescriptions had paracetamol, and 33.9% of the prescriptions had morphine. Most common nonsteroidal anti-inflammatory drugs prescribed was ibuprofen (23.9%, and more than 50% of the prescriptions had aperients. The most commonly prescribed aperient was a combination of liquid paraffin and sodium-picosulfate. Dexamethasone was prescribed in 51.9% of patients and in most cases this was part of oral chemotherapy regimen. Generic names in prescription were used only in 33% of cases, and adverse effects of the drugs were documented in only 9% of cases. In 25% of cases, noncompliance to the WHO prescription guidelines was seen, and patient compliance to prescription was seen in 40% of cases. Conclusions: Audit of the prescribing practices in specialist pediatric palliative care service shows that knowledge of pediatric palliative care formulary, rational drug use, dosing, and prescribing guidelines is essential for symptom control in children with advanced life-limiting illness. Noncompliance to WHO prescribing guidelines in one fourth of cases and using nongeneric names in two-thirds of prescription indicates poor prescribing practices and warrants prescriber education. Prescription

  12. Palliative and end-of-life care in pediatric solid organ transplantation.

    Science.gov (United States)

    Fowler, Amy; Freiberger, Dawn; Moonan, Marilyn

    2015-02-01

    End-of-life care is a component of palliative care and takes a holistic, individualized approach to patients, focusing on the assessment of quality of life and its maintenance until the end of life, and beyond, for the patient's family. Transplant teams do not always make timely referrals to palliative care teams due to various clinician and perceived family barriers, an important one being the simultaneous, active care plan each patient would have alongside an end-of-life plan. Application of findings and further research specific to the pediatric solid organ population would be of significant benefit to guide transplant teams as to the most effective time to introduce end-of-life care, who to involve in ongoing discussions, and important ethical and cultural considerations to include in care planning. Attention must also be paid to clinician training and support in this challenging area of health care. PMID:25422076

  13. 76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Science.gov (United States)

    2011-06-16

    ... Palliative Care Science Needs Assessment: Funding Source Questionnaire (Survey of Authors) SUMMARY: In... opportunity for public comment on proposed data collection projects, the National Institute of Nursing...-of-Life and Palliative Care Science Needs Assessment: Funding Source Questionnaire (Survey of...

  14. Dying in Palliative Care Units and in Hospital: A Comparison of the Quality of Life of Terminal Cancer Patients.

    Science.gov (United States)

    Viney, Linda L.; And Others

    1994-01-01

    Compared quality of life of terminal cancer patients (n=182) in two palliative care units with that of those in general hospital. Patients in specialized palliative care units were found to differ from those dying in hospital, showing less indirectly expressed anger but more positive feelings. They also reported more anxiety about death but less…

  15. Extending the team component of the Latimer ethical decision-making model for palliative care

    Directory of Open Access Journals (Sweden)

    Purkis ME

    2011-04-01

    Full Text Available Mary Ellen Purkis1, Elizabeth Borycki1,2, Craig Kuziemsky3, Fraser Black4, Denise Cloutier-Fisher5, Lee Ann Fox6, Patricia MacKenzie7, Ann Syme1,8, Coby Tschanz1,41School of Nursing, 2School of Health Information Science, University of Victoria, Victoria, British Columbia; 3Telfer School of Management, University of Ottawa, Ottawa, Ontario; 4Victoria Hospice Society, Victoria, British Columbia; 5Department of Geography, University of Victoria, Victoria, British Columbia; 6Kingston General Hospital, Kingston, Ontario; 7School of Social Work, University of Victoria, Victoria, British Columbia; 8British Columbia Cancer Agency, Vancouver Island Centre, Victoria, British Columbia, CanadaBackground: Each year more than 240,000 Canadians die from terminal and chronic illnesses. It is estimated that 62% of those deaths require palliative care. Palliative care is a specialized domain of health professional team practice that requires discipline-specific knowledge, skills, judgment, and expertise in order to address patient hopes, wishes, symptoms, and suffering. With the emergence of palliative care as a specialized area of interdisciplinary practice, new practice models have also emerged, eg, the Latimer ethical decision-making model for palliative care. The purpose of this research was to undertake a descriptive ethnographic field study of palliative care team practices to understand better the interdisciplinary team communication and the issues that arise when members of different health professions work together as a team.Methods: Study data were collected by observing and videotaping palliative care team meetings. Data were then analyzed using direct content analysis.Results: The study findings substantiated many of the team practice concepts outlined in Latimer's model. Palliative care teams engage in a number of processes that address patient symptoms, suffering, hopes, and plans. However, several new findings also emerged from the data that were

  16. Palliative care in advanced cancer patients in a tertiary care hospital in Uttarakhand

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    Manisha Bisht

    2008-01-01

    Full Text Available Aim: Advanced cancer, irrespective of the site of the cancer, is characterized by a number of associated symptoms that impair the quality of life of patients. The management of these symptoms guides palliative care. The present study aims to describe the symptoms and appropriate palliation provided in patients with advanced cancer in a tertiary care hospital in Uttarakhand. Methods: This was an observational study. A total of 100 patients with advanced cancer were included in the study. The data obtained from the patients included symptoms reported by the patients, currently prescribed treatments and the site of cancer. Results: The average number of symptoms reported per patient was 5.33 ± 0.67 (mean ± SE. The most common symptoms were pain, weakness/fatigue, anorexia, insomnia, nausea/vomiting, dyspnea, constipation and cough. Polypharmacy was frequent. Patients consumed approximately 8.7 ± 0.38 (mean ± SE drugs on average during the 2-month period of follow-up. Conclusion: The result gives insight into the varied symptomatology of patients with advanced cancer. Polypharmacy was quite common in patients with advanced cancer, predisposing them to complicated drug interactions and adverse drug reactions.

  17. A Comparative Study on the Palliative Care in Romania and France

    Directory of Open Access Journals (Sweden)

    Mariana ENACHE

    2013-03-01

    Full Text Available The palliative care has old tradition, as the single support and relief of suffering in terminally ill patients form, until the release of antibiotics and the development of modern medical technologies, investigation, diagnosis and treatment. In the 1960s the palliative care was officially recognized as a medical field, focused on the psycho-emotional and spiritual aspects without neglecting, however, the physical aspects of care. Further evolution differed on a country basis.The health insurance systems in Romania and France are based on the same principle of solidarity. The history of the two palliative care systems has close start. In this context, we propose a comparative study to identify the differences and similarities between the systems of palliative care in the two countries. Certain evaluation criteria were selected for this purpose, in order to ensure a complex approach for this type of service. We have used the methods of study documentation and direct observation through an internship performed in a clinic in France, Groupe Hospitalier Saint Augustine-Malestroit.In spite of the chronic low funding of the health system, non-challenging and lean health legislation, the system of palliative care has developed slowly, but progressively, in Romania. Though, the level of services is far below the needs. This is imposing a rigorous analysis of the factors affecting the quality of life of patients and the development of services strongly dependent on these.The French health care system is an example of good practice regarding availability of health care, health care related services, accessibility to the patient, and the legal frame: national policies, legislation, financial planning models and quality control, training and human resources, including the emotional and spiritual support like patient special needs, family support, support for pediatric patients and their families, religious and psychological assistance, staff issues.

  18. Guidelines for a palliative approach for aged care in the community setting: a suite of resources

    Directory of Open Access Journals (Sweden)

    David C. Currow

    2012-11-01

    Full Text Available AbstractIn Australia, many people ageing in their own homes are becoming increasingly frail and unwell, approaching the end of life. A palliative approach, which adheres to palliative care principles, is often appropriate. These principles provide a framework for proactive and holistic care in which quality of life and of dying is prioritised, as is support for families. A palliative approach can be delivered by the general practitioner working with the community aged care team, in collaboration with family carers. Support from specialist palliative care services is available if necessary. The Guidelines for a Palliative Approach for Aged Care in the Community Setting were published by the Australian Government Department of Health and Ageing to inform practice in this area. There are three resource documents. The main document provides practical evidence based guidelines, good practice points, tools, and links to resources. This document is written for general practitioners, nurses, social workers, therapists, pastoral care workers, and other health professionals and responded to needs identified during national consultation. Evidence based guidelines were underpinned by systematic reviews of the research literature. Good practice points were developed from literature reviews and expert opinion. Two ‘plain English’ booklets were developed in a process involving consumer consultation; one is for older people and their families, the other for care workers. The resources are intended to facilitate home care that acknowledges and plans for the client’s deteriorating functional trajectory and inevitable death. At a time when hospitals and residential aged care facilities are under enormous pressure as the population ages, such a planned approach makes sense for the health system as a whole. The approach also makes sense for older people who wish to die in their own homes. Family needs are recognised and addressed. Unnecessary hospitalisations

  19. Palliative care in the home: a case study of secondary histiocytic sarcoma in a 3-year-old child

    Directory of Open Access Journals (Sweden)

    Zuzana Karabová

    2013-12-01

    Full Text Available This article describes the medical, psychological, and social challenges encountered during home-based, family-centred palliative care of a 3-year-old female with secondary histiocytic sarcoma diagnosed during treatment for T-cell acute lymphoblastic leukaemia. Histiocytic sarcoma is an exceedingly rare cancer in adults, but even less frequent and highly aggressive when presenting as a secondary cancer in children. Comprehensive, multidisciplinary paediatric hospice care services are not widely available across Slovakia,thus limiting the number of patients and families offered such highly specialized end-of-life care. This case study illustrates the primary benefits for the child and family of such a program as well as the impact on the medical and nursing professionals working in the fi eld of paediatric haematology-oncology.

  20. Evaluation of an Interdisciplinary Curriculum Teaching Team-Based Palliative Care Integration in Oncology.

    Science.gov (United States)

    Head, Barbara A; Schapmire, Tara; Earnshaw, Lori; Faul, Anna; Hermann, Carla; Jones, Carol; Martin, Amy; Shaw, Monica Ann; Woggon, Frank; Ziegler, Craig; Pfeiffer, Mark

    2016-06-01

    For students of the health care professions to succeed in today's health care environment, they must be prepared to collaborate with other professionals and practice on interdisciplinary teams. As most will care for patients with cancer, they must also understand the principles of palliative care and its integration into oncology. This article reports the success of one university's effort to design and implement an interdisciplinary curriculum teaching team-based palliative care in oncology which was mandatory for medical, nursing, social work, and chaplaincy students. Quantitative evaluation indicated that students made significant improvements related to palliative care knowledge and skills and readiness for interprofessional education. Qualitative feedback revealed that students appreciated the experiential aspects of the curriculum most, especially the opportunity to observe palliative teams at work and practice team-based skills with other learners. While there exist many obstacles to interprofessional education and hands-on learning, the value of such experiences to the learners justifies efforts to initiate and continue similar programs in the health sciences. PMID:25708910

  1. Assessing and Responding to Palliative Care Needs in Rural Sub-Saharan Africa: Results from a Model Intervention and Situation Analysis in Malawi

    OpenAIRE

    Herce, Michael E.; Elmore, Shekinah N; Kalanga, Noel; Keck, James W.; Emily B Wroe; Phiri, Atupere; Mayfield, Alishya; Chingoli, Felix; Jason A Beste; Tengatenga, Listern; Bazile, Junior; Krakauer, Eric L.; Rigodon, Jonas

    2014-01-01

    Introduction Palliative care is rarely accessible in rural sub-Saharan Africa. Partners In Health and the Malawi government established the Neno Palliative Care Program (NPCP) to provide palliative care in rural Neno district. We conducted a situation analysis to evaluate early NPCP outcomes and better understand palliative care needs, knowledge, and preferences. Methods Employing rapid evaluation methodology, we collected data from 3 sources: 1) chart review of all adult patients from the NP...

  2. Assessing and Responding to Palliative Care Needs in Rural Sub-Saharan Africa: Results from a Model Intervention and Situation Analysis in Malawi

    OpenAIRE

    Herce, Michael E.; Elmore, Shekinah N; Kalanga, Noel; Keck, James W.; Emily B Wroe; Phiri, Atupere; Mayfield, Alishya; Chingoli, Felix; Jason A Beste; Tengatenga, Listern; Bazile, Junior; Krakauer, Eric L.; Rigodon, Jonas

    2014-01-01

    Introduction: Palliative care is rarely accessible in rural sub-Saharan Africa. Partners In Health and the Malawi government established the Neno Palliative Care Program (NPCP) to provide palliative care in rural Neno district. We conducted a situation analysis to evaluate early NPCP outcomes and better understand palliative care needs, knowledge, and preferences. Methods: Employing rapid evaluation methodology, we collected data from 3 sources: 1) chart review of all adult patients from the ...

  3. Caring for patients with rabies in developing countries - the neglected importance of palliative care.

    Science.gov (United States)

    Tarantola, Arnaud; Crabol, Yoann; Mahendra, Bangalore Jayakrishnappa; In, Sotheary; Barennes, Hubert; Bourhy, Hervé; Peng, Yiksing; Ly, Sowath; Buchy, Philippe

    2016-04-01

    Although limited publications address clinical management of symptomatic patients with rabies in intensive care units, the overwhelming majority of human rabies cases occur in the rural setting of developing countries where healthcare workers are few, lack training and drugs. Based on our experience, we suggest how clinicians in resource-limited settings can make best use of essential drugs to provide assistance to patients with rabies and their families, at no risk to themselves. Comprehensive and compassionate patient management of furious rabies should aim to alleviate thirst, anxiety and epileptic fits using infusions, diazepam or midazolam and antipyretic drugs via intravenous or intrarectal routes. Although the patient is dying, respiratory failure must be avoided especially if the family, after being informed, wish to take the patient home alive for funereal rites to be observed. Healthcare staff should be trained and clinical guidelines should be updated to include palliative care for rabies in endemic countries. PMID:26806229

  4. Cancer rehabilitation and palliative care: critical components in the delivery of high-quality oncology services.

    Science.gov (United States)

    Silver, Julie K; Raj, Vishwa S; Fu, Jack B; Wisotzky, Eric M; Smith, Sean Robinson; Kirch, Rebecca A

    2015-12-01

    Palliative care and rehabilitation practitioners are important collaborative referral sources for each other who can work together to improve the lives of cancer patients, survivors, and caregivers by improving both quality of care and quality of life. Cancer rehabilitation and palliative care involve the delivery of important but underutilized medical services to oncology patients by interdisciplinary teams. These subspecialties are similar in many respects, including their focus on improving cancer-related symptoms or cancer treatment-related side effects, improving health-related quality of life, lessening caregiver burden, and valuing patient-centered care and shared decision-making. They also aim to improve healthcare efficiencies and minimize costs by means such as reducing hospital lengths of stay and unanticipated readmissions. Although their goals are often aligned, different specialized skills and approaches are used in the delivery of care. For example, while each specialty prioritizes goal-concordant care through identification of patient and family preferences and values, palliative care teams typically focus extensively on using patient and family communication to determine their goals of care, while also tending to comfort issues such as symptom management and spiritual concerns. Rehabilitation clinicians may tend to focus more specifically on functional issues such as identifying and treating deficits in physical, psychological, or cognitive impairments and any resulting disability and negative impact on quality of life. Additionally, although palliative care and rehabilitation practitioners are trained to diagnose and treat medically complex patients, rehabilitation clinicians also treat many patients with a single impairment and a low symptom burden. In these cases, the goal is often cure of the underlying neurologic or musculoskeletal condition. This report defines and describes cancer rehabilitation and palliative care, delineates their

  5. Communication with relatives and collusion in palliative care: A cross-cultural perspective

    Directory of Open Access Journals (Sweden)

    Santosh K Chaturvedi

    2009-01-01

    Full Text Available Handling collusion among patients and family members is one of the biggest challenges that palliative care professionals face across cultures. Communication with patients and relatives can be complex particularly in filial cultures where families play an important role in illness management and treatment decision-making. Collusion comes in different forms and intensity and is often not absolute. Some illness-related issues may be discussed with the patient, whereas others are left unspoken. Particularly in palliative care, the transition from curative to palliative treatment and discussion of death and dying are often topics involving collusion. Communication patterns may also be influenced by age, gender, age, and family role. This paper outlines different types of collusion and how collusion manifests in Indian and Western cultures. In addition, promising avenues for future research are presented.

  6. Mechanism-based classification of pain for physical therapy management in palliative care: A clinical commentary

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    Senthil P Kumar

    2011-01-01

    Full Text Available Pain relief is a major goal for palliative care in India so much that most palliative care interventions necessarily begin first with pain relief. Physical therapists play an important role in palliative care and they are regarded as highly proficient members of a multidisciplinary healthcare team towards management of chronic pain. Pain necessarily involves three different levels of classification-based upon pain symptoms, pain mechanisms and pain syndromes. Mechanism-based treatments are most likely to succeed compared to symptomatic treatments or diagnosis-based treatments. The objective of this clinical commentary is to update the physical therapists working in palliative care, on the mechanism-based classification of pain and its interpretation, with available therapeutic evidence for providing optimal patient care using physical therapy. The paper describes the evolution of mechanism-based classification of pain, the five mechanisms (central sensitization, peripheral neuropathic, nociceptive, sympathetically maintained pain and cognitive-affective are explained with recent evidence for physical therapy treatments for each of the mechanisms.

  7. Transition to palliative care when transcatheter aortic valve implantation is not an option: opportunities and recommendations

    Science.gov (United States)

    Lauck, Sandra B.; Gibson, Jennifer A.; Baumbusch, Jennifer; Carroll, Sandra L.; Achtem, Leslie; Kimel, Gil; Nordquist, Cindy; Cheung, Anson; Boone, Robert H.; Ye, Jian; Wood, David A.; Webb, John G.

    2016-01-01

    Purpose of review Transcatheter aortic valve implantation (TAVI) is the recommended treatment for most patients with symptomatic aortic stenosis at high surgical risk. However, TAVI may be clinically futile for patients who have multiple comorbidities and excessive frailty. This group benefits from transition to palliative care to maximize quality of life, improve symptoms, and ensure continuity of health services. We discuss the clinical determination of utility and futility, explore the current evidence guiding the integration of palliative care in procedure-focused cardiac programs, and outline recommendations for TAVI programs. Recent findings The determination of futility of treatment in elderly patients with aortic stenosis is challenging. There is a paucity of research available to guide best practices when TAVI is not an option. Opportunities exist to build on the evidence gained in the management of end of life and heart failure. TAVI programs and primary care providers can facilitate improved communication and processes of care to provide decision support and transition to palliative care. Summary The increased availability of transcatheter options for the management of valvular heart disease will increase the assessment of people with life-limiting conditions for whom treatment may not be an option. It is pivotal to bridge cardiac innovation and palliation to optimize patient outcomes. PMID:26716394

  8. Physical therapy in palliative care: From symptom control to quality of life: A critical review

    Directory of Open Access Journals (Sweden)

    Senthil P Kumar

    2010-01-01

    Full Text Available Physiotherapy is concerned with identifying and maximizing movement potential, within the spheres of promotion, prevention, treatment and rehabilitation. Physical therapists practice in a broad range of inpatient, outpatient, and community-based settings such as hospice and palliative care centers where as part of a multidisciplinary team of care, they address the physical and functional dimensions of the patients′ suffering. Physiotherapy treatment methods like therapeutic exercise, electrical modalities, thermal modalities, actinotherapy, mechanical modalities, manual physical therapy and assistive devices are useful for a range of life-threatening and life-limiting conditions like cancer and cancer-associated conditions; HIV; neurodegenerative disorders like amyotrophic lateral sclerosis, multiple sclerosis; respiratory disorders like idiopathic pulmonary fibrosis; and altered mental states. The professional armamentarium is still expanding with inclusion of other miscellaneous techniques which were also proven to be effective in improving quality of life in these patients. Considering the scope of physiotherapy in India, and in palliative care, professionals in a multidisciplinary palliative care team need to understand and mutually involve toward policy changes to successfully implement physical therapeutic palliative care delivery.

  9. An overview of hospice and palliative care nursing models and theories.

    Science.gov (United States)

    Dobrina, Raffaella; Tenze, Maja; Palese, Alvisa

    2014-02-01

    Current literature reports that nurses are the members of the health-care team who have the most contact with patients facing a life-threatening illness. The multidisciplinary palliative care approach means that hospice and palliative care nurses require a consistent theoretical foundation in order to be confident of and able to explain their role. The aim of this paper is to describe existing palliative care and hospice nursing models and theories and to identify their core concepts. Literature published between 2002 and 2012 on such models was reviewed and subjected to content analysis. Ten core concepts were identified that fell into three categories: patient, nurse, and therapeutic relationship. The themes and values identified in the end-of-life nursing models and theories are congruent with palliative care best practices based on a patient-centred and an interdisciplinary teamwork approach. In developing a therapeutic relationship with patients, nurses have a 'privileged' experience that may lead to existential growth and job satisfaction. PMID:24577213

  10. Using Numbers Creates Value for Health Professionals: A Quantitative Study of Pain Management in Palliative Care

    Directory of Open Access Journals (Sweden)

    Anna Unné

    2014-07-01

    Full Text Available Improvement methodology is based on processes to achieve quality and safety in health care in order to improve patient care, especially in management. The aim of this study was to identify differences regarding the method of estimating pain within palliative care in north-eastern Sweden. The study comprised three different data collections—questions from 22 staff members who worked in palliative care, data from the Swedish Palliative Registry, and patients’ medical records. Data were analyzed using a quantitative approach to measure the proportion of differences and similarities in everyday pain management. The two categories “Documentation of Pain Management” and “Pain Management Activities” were identified and illustrated how repeated pain management measurements contributed to a clearer view of pain management activities. The use of numbers instead of words contributed to a better, clearer, and more unified documentation of pain ratings. Use of validated rating tools regarding patients last week of life increased from 47%–100%. This study may inspire better routines to estimate pain and quantify no pain in palliative care. Evidence-based measurement tools from the patient’s perspective, can improve pain management.

  11. Palliative care making a difference in rural Uganda, Kenya and Malawi: three rapid evaluation field studies

    Directory of Open Access Journals (Sweden)

    Bettega Nadia

    2011-05-01

    Full Text Available Abstract Background Many people live and die in pain in Africa. We set out to describe patient, family and local community perspectives on the impact of three community based palliative care interventions in sub-Saharan Africa. Methods Three palliative care programmes in Uganda, Kenya and Malawi were studied using rapid evaluation field techniques in each country, triangulating data from three sources: interviews with key informants, observations of clinical encounters and the local health and social care context, and routine data from local reports and statistics. Results We interviewed 33 patients with advanced illness, 27 family carers, 36 staff, 25 volunteers, and 29 community leaders and observed clinical care of 12 patients. In each site, oral morphine was being used effectively. Patients valued being treated with dignity and respect. Being supported at home reduced physical, emotional and financial burden of travel to, and care at health facilities. Practical support and instruction in feeding and bathing patients facilitated good deaths at home. In each country mobile phones enabled rapid access to clinical and social support networks. Staff and volunteers generally reported that caring for the dying in the face of poverty was stressful, but also rewarding, with resilience fostered by having effective analgesia, and community support networks. Conclusions Programmes were reported to be successful because they integrated symptom control with practical and emotional care, education, and spiritual care. Holistic palliative care can be delivered effectively in the face of poverty, but a public health approach is needed to ensure equitable provision.

  12. A region-based palliative care intervention trial using the mixed-method approach: Japan OPTIM study

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    Morita Tatsuya

    2012-01-01

    Full Text Available Abstract Background Disseminating palliative care is a critical task throughout the world. Several outcome studies explored the effects of regional palliative care programs on a variety of end-points, and some qualitative studies investigated the process of developing community palliative care networks. These studies provide important insights into the potential benefits of regional palliative care programs, but the clinical implications are still limited, because: 1 many interventions included fundamental changes in the structure of the health care system, and, thus, the results would not be applicable for many regions where structural changes are difficult or unfeasible; 2 patient-oriented outcomes were not measured or explored only in a small number of populations, and interpretation of the results from a patient's view is difficult; and 3 no studies adopted a mixed-method approach using both quantitative and qualitative methodologies to interpret the complex phenomenon from multidimensional perspectives. Methods/designs This is a mixed-method regional intervention trial, consisting of a pre-post outcome study and qualitative process studies. The primary aim of the pre-post outcome study is to evaluate the change in the number of home deaths, use of specialized palliative care services, patient-reported quality of palliative care, and family-reported quality of palliative care after regional palliative care intervention. The secondary aim is to explore the changes in a variety of outcomes, including patients' quality of life, pain intensity, family care burden, and physicians' and nurses' knowledge, difficulties, and self-perceived practice. Outcome measurements used in this study include the Care Evaluation Scale, Good Death Inventory, Brief pain Inventory, Caregiving Consequence Inventory, Sense of Security Scale, Palliative Care Knowledge test, Palliative Care Difficulties Scale, and Palliative Care Self-reported Practice Scale. Study

  13. Integration of legal aspects and human rights approach in palliative care delivery-the Nyeri Hospice model.

    Science.gov (United States)

    Musyoki, David; Gichohi, Sarafina; Ritho, Johnson; Ali, Zipporah; Kinyanjui, Asaph; Muinga, Esther

    2016-01-01

    Palliative care is patient and family-centred care that optimises quality of life by anticipating, preventing, and treating suffering. Open Society Foundation public health program (2011) notes that people facing life-threatening illnesses are deeply vulnerable: often in severe physical pain, worried about death, incapacitation, or the fate of their loved ones. Legal issues can increase stress for patients and families and make coping harder, impacting on the quality of care. In the absence of a clear legal provision expressly recognising palliative care in Kenya, providers may face numerous legal and ethical dilemmas that affect the availability, accessibility, and delivery of palliative care services and commodities. In order to ensure positive outcomes from patients, their families, and providers, palliative care services should be prioritised by all and includes advocating for the integration of legal support into those services. Palliative care service providers should be able to identify the various needs of patients and their families including specific issues requiring legal advice and interventions. Access to legal services remains a big challenge in Kenya, with limited availability of specialised legal services for health-related legal issues. An increased awareness of the benefits of legal services in palliative care will drive demand for easily accessible and more affordable direct legal services to address legal issues for a more holistic approach to quality palliative care. PMID:27563351

  14. Integration of legal aspects and human rights approach in palliative care delivery—the Nyeri Hospice model

    Science.gov (United States)

    Musyoki, David; Gichohi, Sarafina; Ritho, Johnson; Ali, Zipporah; Kinyanjui, Asaph; Muinga, Esther

    2016-01-01

    Palliative care is patient and family-centred care that optimises quality of life by anticipating, preventing, and treating suffering. Open Society Foundation public health program (2011) notes that people facing life-threatening illnesses are deeply vulnerable: often in severe physical pain, worried about death, incapacitation, or the fate of their loved ones. Legal issues can increase stress for patients and families and make coping harder, impacting on the quality of care. In the absence of a clear legal provision expressly recognising palliative care in Kenya, providers may face numerous legal and ethical dilemmas that affect the availability, accessibility, and delivery of palliative care services and commodities. In order to ensure positive outcomes from patients, their families, and providers, palliative care services should be prioritised by all and includes advocating for the integration of legal support into those services. Palliative care service providers should be able to identify the various needs of patients and their families including specific issues requiring legal advice and interventions. Access to legal services remains a big challenge in Kenya, with limited availability of specialised legal services for health-related legal issues. An increased awareness of the benefits of legal services in palliative care will drive demand for easily accessible and more affordable direct legal services to address legal issues for a more holistic approach to quality palliative care. PMID:27563351

  15. Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial

    OpenAIRE

    Slota, Christina; Ulrich, Connie M.; Miller-Davis, Claiborne; Baker, Karen; Wallen, Gwenyth R.

    2014-01-01

    Background Palliative care is a vital component of patient-centered care. It has increasingly become central to the management and care of seriously ill patients by integrating physical, psychosocial, and spiritual supportive services. Through qualitative inquiry, this paper examines cancer patients’ perceptions of the process and outcomes of the pain and palliative care consultative services they received while enrolled in a clinical trial. Methods A qualitative analysis of open-ended questi...

  16. Palliative care for older people – exploring the views of doctors and nurses from different fields in Germany

    OpenAIRE

    Schneider Nils; Schumacher Martin; Brueckner Torben

    2009-01-01

    Abstract Background Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation. Methods In a qualitative study design, focus groups were established consisting of general practitioners, geriatricians...

  17. Prescription pattern of analgesic drugs for patients receiving Palliative Care in a Teaching Hospital in India

    Directory of Open Access Journals (Sweden)

    Vishma Hydie Menezes

    2016-01-01

    Conclusion: The study shows that prescription pattern in palliative care unit of this hospital was in accordance with WHO pain management guidelines. The study showed the current trend in prescription of analgesic drugs in the teaching hospital where the study was conducted.

  18. Motivation of volunteers to work in palliative care setting: A qualitative study

    Directory of Open Access Journals (Sweden)

    M A Muckaden

    2016-01-01

    Full Text Available Background: Volunteers are an integral part of the palliative care services in the Tata Memorial Hospital, Mumbai, Maharashtra, India. These volunteers are an important resource for the department. Thus, it is necessary for the department to determine what motivates these volunteers to continue to work in the setting, acknowledge them and direct efforts toward retaining them and giving them opportunities to serve to the best of their desire and abilities. Aims: The current study aimed at understanding the motivation of volunteers to work in palliative care, to identify the challenges they face and also the effect of their work on their self and relationships. Methodology: In-depth interviews were conducted using semistructured interview guide to study above mentioned aspects. Themes were identified and coding was used to analyze the data. Results: The results suggested that the basic motivation for all the volunteers to work in a palliative care setting is an inherent urge, a feeling of need to give back to the society by serving the sick and the suffering. Other motivating factors identified were team spirit, comfort shared, warm and respectful treatment by the team, satisfying nature of work, experience of cancer in the family, and aligned values and beliefs. Some intrinsic rewards mentioned by volunteers were joy of giving, personal growth, enriching experiences, and meaningful nature of work. Conclusion: The study attempted to improve opportunities of working for these volunteers. Although limited in scope, it offers insight for future research in the area of volunteerism in palliative care setup.

  19. Paediatric palliative care : recommendations for treatment of symptoms in the Netherlands

    NARCIS (Netherlands)

    Knops, Rutger R. G.; Kremer, Leontien C. M.; Verhagen, A. A. Eduard

    2015-01-01

    Background: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high qua

  20. Paediatric palliative care : recommendations for treatment of symptoms in the Netherlands

    NARCIS (Netherlands)

    Knops, Rutger R G; Kremer, Leontien C M; Verhagen, A A Eduard

    2015-01-01

    BACKGROUND: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high qua

  1. Spiritual concerns in Hindu cancer patients undergoing palliative care: A qualitative study

    Directory of Open Access Journals (Sweden)

    Srinagesh Simha

    2013-01-01

    Full Text Available Aims: Spiritual concerns are being identified as important components of palliative care. The aim of this study was to explore the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India. Materials and Methods: The methodology used was a qualitative method: Interpretive phenomenological analysis. A semi-structured interview guide was used to collect data, based on Indian and western literature reports. Certain aspects like karma and pooja, relevant to Hindus, were included. Theme saturation was achieved on interviewing 10 participants. Results: The seven most common spiritual concerns reported were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one′s situation, belief in karma, and the question "Why me?" No participant expressed four of the concerns studied: Loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle. Conclusions: This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. The study indicates the need for adequate attention to spiritual aspects during palliative care.

  2. Surveying Community Nursing Support for Persons with an Intellectual Disability and Palliative Care Needs

    Science.gov (United States)

    Bailey, Maria; Doody, Owen; Lyons, Rosemary

    2016-01-01

    Palliative care services have developed over the years to support all persons with life-limiting conditions. Moreover, services for people with an intellectual disability have moved from the traditional institutional setting to supporting people with an intellectual disability to live in their own community and family home. The expansion of…

  3. Palliative radiotherapy for patients with bone metastases: survey of primary care physicians

    International Nuclear Information System (INIS)

    Three hundred Canadian primary care physicians were surveyed to determine their perceived barriers to the accessibility of palliative bone radiotherapy and their perceptions regarding treatment efficacy. The response rate was 61%. Factors perceived to hinder accessibility were identified, and the physicians recognized they were not comfortable with their radiotherapy knowledge

  4. Creating Discursive Order at the End of Life: The Role of Genres in Palliative Care Settings

    Science.gov (United States)

    Schryer, Catherine; McDougall, Allan; Tait, Glendon R.; Lingard, Lorelei

    2012-01-01

    This article investigates an emerging practice in palliative care: dignity therapy. Dignity therapy is a psychotherapeutic intervention that its proponents assert has clinically significant positive impacts on dying patients. Dignity therapy consists of a physician asking a patient a set of questions about his or her life and returning to the…

  5. Perinatal Palliative Care: Barriers and Attitudes of Neonatologists and Nurses in Poland

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    Aleksandra Korzeniewska-Eksterowicz

    2013-01-01

    Full Text Available Objective. To identify barriers and personnel attitudes towards realization of palliative care principles in neonatological units. Study Design. An anonymous questionnaire was posted to all heads of departments and head nurses of all the 27 neonatological units in the Lodz area. Results. We received 46 (85% questionnaires. Final analysis comprised 42 properly filled-in questionnaires (by 22 doctors and 20 nurses. In case of prenatal diagnosis of a lethal defect, 77.27% of doctors and 65% of nurses opted for informing the mother also about the possibility of pregnancy continuation and organization of palliative care after delivery. Most of respondents accepted conditions for abortion pointed by the Polish law. The most common barriers pointed out by both groups were insufficient knowledge of the personnel on palliative medicine and family preference for life sustaining treatment. Conclusions. Understanding attitudes of personnel towards palliative care and identification of barriers are a starting point for future efforts to improve the system of neonatological care.

  6. Acting as standardized patients enhances family medicine residents' self-reported skills in palliative care.

    Science.gov (United States)

    Sittikariyakul, Pat; Jaturapatporn, Darin; Kirshen, A J

    2015-08-01

    Recent publications have confirmed the use of standardized patients (SPs) in improving clinical skills and enhancing competency. Little research has studied the benefits residents may themselves gain in palliative care playing the role of SPs. Nineteen Family Medicine residents were recruited as standardized patients (FMR-SPs) for a mandatory palliative care workshop in communication for incoming, first-year trainees. Four months later, FMR-SPs reflected upon their own experiences. Two independent researchers performed thematic analysis of these interviews. Most of the residents were satisfied with their roles. Twelve reported improved understanding of self, their patients, the doctor-patient relationship, and the underlying philosophy of palliative care. They also described improved verbal and non-verbal communication skills. Eleven of 14 residents reflected upon behavioral changes in problem coping styles. All residents indicated an intention to apply the learning in their future work. Encouraging Thai Family Medicine residents, in years one through three, to portray SPs in palliative care appears to be a valuable learning experience for the resident. Future studies to validate whether this learning has been applied in subsequent practice are planned. PMID:25256636

  7. An interdisciplinary approach to palliative care - context and challenges in basic education programmes

    DEFF Research Database (Denmark)

    Sangild Stølen, Karen Marie; Breum, Wanda Elisabeth; Andersen, Tanja Thinggaard

    2015-01-01

    , psychological, social and existential perspectives is necessary in order to be able to meet the needs of these people. The health education programmes should therefore offer instruction in palliative care. On this background, University College Capital has developed an interdisciplinary elective course on...

  8. Palliative care for older people – exploring the views of doctors and nurses from different fields in Germany

    Directory of Open Access Journals (Sweden)

    Schneider Nils

    2009-06-01

    Full Text Available Abstract Background Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation. Methods In a qualitative study design, focus groups were established consisting of general practitioners, geriatricians, palliative care physicians, palliative care nurses and general nurses (a total of 29 participants. The group discussions were recorded, transcribed, coded and analysed using the methodological approach of Qualitative Description. Results Deficiencies in teamwork and conflicting role definitions between doctors and nurses and between family practitioners and medical specialists were found to be central problems affecting the provision of appropriate palliative care for older people. It was emphasized that there are great advantages to family doctors playing a leading role, as they usually have the longest contacts to the patients. However, the professional qualifications of family doctors were to some extent criticized. The general practitioners for their part criticized the increasing specialization on the field of palliative care. All groups complained that the German compensation system gives insufficient consideration to the time-consuming care of older patients, and about excessive bureaucracy. Conclusion General practitioners are the central health professionals in the delivery of palliative care for older people. They should however be encouraged to involve specialized services such as palliative care teams where necessary. With the German health care reform of 2007, a legal framework has been created that allows for this. As far as its realization is concerned, it must be ensured that the spotlight remains on the needs of the patients and not on

  9. What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators

    OpenAIRE

    Mistry, Bina; Bainbridge, Daryl; Bryant, Deanna; Tan Toyofuku, Sue; Seow, Hsien

    2015-01-01

    Objectives There has been little research conducted to understand the essential meaning of quality, community-based, end-of-life (EOL) care, despite the expansion of these services. The purpose of this study was to define what matters most for EOL care from the perspective of a diverse range of palliative care providers in the community who have daily encounters with death and dying. Methods We used interviews to explore the perceptions of providers and administrators from 14 specialised pall...

  10. The National Tumor Association Foundation (ANT: A 30 year old model of home palliative care

    Directory of Open Access Journals (Sweden)

    Bonazzi Valeria

    2010-06-01

    Full Text Available Abstract Background Models of palliative care delivery develop within a social, cultural, and political context. This paper describes the 30-year history of the National Tumor Association (ANT, a palliative care organization founded in the Italian province of Bologna, focusing on this model of home care for palliative cancer patients and on its evaluation. Methods Data were collected from the 1986-2008 ANT archives and documents from the Emilia-Romagna Region Health Department, Italy. Outcomes of interest were changed in: number of patients served, performance status at admission (Karnofsky Performance Status score [KPS], length of participation in the program (days of care provided, place of death (home vs. hospital/hospice, and satisfaction with care. Statistical methods included linear and quadratic regressions. A linear and a quadratic regressions were generated; the independent variable was the year, while the dependent one was the number of patients from 1986 to 2008. Two linear regressions were generated for patients died at home and in the hospital, respectively. For each regression, the R square, the unstandardized and standardized coefficients and related P-values were estimated. Results The number of patients served by ANT has increased continuously from 131 (1986 to a cumulative total of 69,336 patients (2008, at a steady rate of approximately 121 additional patients per year and with no significant gender difference. The annual number of home visits increased from 6,357 (1985 to 904,782 (2008. More ANT patients died at home than in hospice or hospital; this proportion increased from 60% (1987 to 80% (2007. The rate of growth in the number of patients dying in hospital/hospice was approximately 40 patients/year (p 40 increased. Mean days of care for patients with KPS > 40 exceeded mean days for patients with KPS Conclusions The ANT home care model of palliative care delivery has been well-received, with progressively growing numbers

  11. Nursing concerns with palliative care and at the end-of-life in patients with heart failure

    Directory of Open Access Journals (Sweden)

    Westlake C

    2015-02-01

    Full Text Available Cheryl Westlake,1 Valerie Joy Smith2 1School of Nursing, Azusa Pacific University, Azusa, CA, USA; 2Department of Nursing, Keck Medical Center of University of Southern California, Los Angeles, CA, USA Abstract: Patients with chronic heart failure (HF suffer from numerous symptoms and quality-of-life (QOL concerns, and thus, palliative care, a multidisciplinary approach that includes the family and focuses on the improvement of patients' and their families' QOL through the relief of physical, psychosocial, and spiritual suffering, is needed. The transition to hospice care is made when HF is refractory to medical therapy or when the potential harm of treatment outweighs the potential benefits. Nurses are key persons for patients with HF as they may initiate and support palliative and hospice care, focus on delivering patients' goal-directed, well-coordinated care, champion patients' and caregivers' needs, and facilitate optimal QOL. Despite the inclusion of palliative and hospice care for HF patients in published guidelines, health care providers are frequently unfamiliar with palliative and hospice care and the needs of HF patients and their families. Therefore, this paper addresses the nurses' role in determining for whom, and when palliative and hospice care is appropriate; where and how palliative and hospice care should be provided; and the communication needs of patients and their families regarding referral to hospice, emergencies, implantable cardioverter-defibrillator therapy, ventricular assist devices, and continuous intravenous inotropic or vasoactive support at the end-of-life. Keywords: palliative care, hospice care, end of life care, palliative care nursing, hospice care nursing, heart failure, heart failure therapy

  12. Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale

    Directory of Open Access Journals (Sweden)

    Moll Tony

    2010-01-01

    Full Text Available Abstract Background Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale in a multi-centred international study. Methods Validation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearman's rank tests; Phase 3. Internal consistency (Cronbach's alpha calculated twice using 2 datasets, test-retest reliability (intraclass correlation coefficients calculated for 2 time points and time to complete (calculated twice using 2 datasets. Results The validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers demonstrated good interpretation; Phase 2. POS-MVQoLI Spearman's rank correlations were low-moderate as expected (N = 285; Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2 Cronbach's Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89; median time to complete 7 mins, reducing to 5 mins at second visit. Conclusions The APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa.

  13. Where there is no morphine: The challenge and hope of palliative care delivery in Tanzania

    Directory of Open Access Journals (Sweden)

    Kristopher Hartwig

    2014-01-01

    Full Text Available Background: In Tanzania, a country of 42 million, access to oral morphine is rare.Aim: To demonstrate the effectiveness of palliative care teams in reducing patients’ pain and in increasing other positive life qualities in the absence of morphine; and to document the psychological burden experienced by their clinical providers, trained in morphine delivery, as they observed their patients suffering and in extreme pain.Setting: One hundred and forty-fie cancer patients were included from 13 rural hospitals spread across Tanzania.Method: A mixed method study beginning with a retrospective quantitative analysis of cancer patients who were administered the APCA African POS tool four times. Bivariate analyses of the scores at time one and four were compared across the domains. The qualitative arm included an analysis of interviews with six nurses, each with more than fie years’ palliative care experience and no access to strong opioids.Results: Patients and their family caregivers identifid statistically signifiant (p < 0.001 improvements in all of the domains. Thematic analysis of nurse interviews described the patient and family benefis from palliative care but also their great distress when ‘bad cases’ arose who would likely benefi only from oral morphine.Conclusion: People living with chronic cancer-related pain who receive palliative care experience profound physical, spiritual and emotional benefis even without oral morphine. These results demonstrate the need for continued advocacy to increase the availability of oral morphine in these settings in addition to palliative care services.

  14. Evidence of care comprehensiveness in the practice of nursing staff in oncology palliative care

    Directory of Open Access Journals (Sweden)

    Marcelle Miranda da Silva

    2014-12-01

    Full Text Available The objective was to identify evidences of comprehensive care in the professional practice of the nursing staff in the context of oncology palliative care. In this descriptive, qualitative study, seven nurses and four nursing technicians were interviewed. Thematic analysis resulted two thematic units: Evidences of comprehensive care in the practice of the nursing professionals and teamwork as the premise of comprehensive care. The nursing staff’s actions are based on communication, converging efforts, and forming a network with other professionals to meet the multiple needs of the individuals and their families in order to offer comfort and quality of life. Self-worth and self-perception of the nursing team should be encouraged as key elements in the dynamics and organization of the work, while the availability of resources is primordial to be able to apply the instruments of interaction and the organizational policy that supports being interdisciplinary and therefore complete and comprehensive. doi: 10.5216/ree.v16.i4.25700.

  15. Gendered Processes in Hospice Palliative Home Care for Seniors With Cancer and Their Family Caregivers.

    Science.gov (United States)

    Sutherland, Nisha; Ward-Griffin, Catherine; McWilliam, Carol; Stajduhar, Kelli

    2016-06-01

    There has been limited investigation into the processes that shape gender (in)equities in hospice palliative home care. As part of a larger critical ethnographic study, we examined how and why gender relations occur in this context. Using a critical feminist lens, we conducted in-depth interviews with clients living with terminal cancer, their family caregivers and primary nurses; observations of agency home visits; and review of institutional documents. A gender-based analysis revealed that gender enactments of Regulating Gender Relations were legitimized through ideological processes of Normalizing Gender Relations and Equalizing Gender Relations (Re)produced through institutional discourses of individualism and egalitarianism, these gendered processes both advantaged and disadvantaged men and women in hospice palliative home care. Findings suggest that to promote equity, health care providers and policy makers must attend to gender as a prevalent social determinant of health and health care. Implications for policy, practice, education, and research are discussed. PMID:26489710

  16. Predictors of Intention to Refer to Pediatric Palliative or Hospice Care.

    Science.gov (United States)

    Conner, Norma E; Uddin, Nizam

    2016-08-01

    The purpose of this descriptive correlational study was to determine whether nurse characteristics, level of comfort with care of the dying, and spirituality predict intention to refer and timing of referral to pediatric palliative/hospice care. The Behavioral Model of Health Services Use served as the framework for this study. Data were collected from 105 pediatric nurses recruited from 7 patient units of one pediatric hospital. Regression analysis revealed several nurse factors (practice unit, years of experience, age, race/ethnicity) that predicted intent to refer and timing of referral to pediatric palliative/hospice care. The relationship between nurse characteristics and intent to refer was specific to certain medical conditions (HIV, extreme prematurity, brain injuries). Healthcare providers can use these findings to improve care for children with life-limiting illnesses. PMID:26150677

  17. The PERS(2) ON score for systemic assessment of symptomatology in palliative care: a pilot study.

    Science.gov (United States)

    Masel, E K; Berghoff, A S; Schur, S; Maehr, B; Schrank, B; Simanek, R; Preusser, M; Marosi, C; Watzke, H H

    2016-07-01

    The comprehensive assessment of symptoms is the basis for effective, individualised palliative treatment. Established scoring systems provide in-depth information but are often lengthy and hence unsuitable. We introduce the PERS(2) ON score as a short and practically feasible score to evaluate symptom burden. Fifty patients admitted to a Palliative Care Unit rated seven items, i.e. pain, eating (loss of appetite/weight loss), rehabilitation (physical impairment), social situation (possibility for home care), suffering (anxiety/burden of disease/depression), O2 (dyspnoea) and nausea/emesis, on a scale ranging from 0 (absence) to 10 (worst imaginable), resulting in a score ranging from 0 to 70. Assessments were performed at admission, 7 days after admission and at the day of discharge. Symptom intensity scores were calculated, and change over time was evaluated. A significant improvement was observed from the PERS²ON score between admission and 7 days (P evaluation to evaluation on the day of discharge was observed (P = 0.001; paired t-test). This study provides initial evidence that the PERS²ON score is both feasible and sensitive to changes of the most prominent symptoms in palliative care. It may be useful in clinical practice to direct palliative treatment strategies and provide targeted symptom management. PMID:26564404

  18. A comparative study of the palliative care needs of heart failure and cancer patients.

    LENUS (Irish Health Repository)

    O'Leary, Norma

    2012-02-01

    AIMS: Studies suggest that patients with advanced heart failure (HF) have unmet palliative care (PC) needs. However, many of these studies have been retrospective or based on patients receiving poorly coordinated ad hoc care. We aimed to demonstrate whether the PC needs of patients with advanced HF receiving specialist multidisciplinary coordinated care are similar to cancer patients deemed to have specialist PC needs; thereby justifying the extension of specialist PC services to HF patients. METHODS AND RESULTS: This was a cross-sectional comparative cohort study of 50 HF patients and 50 cancer patients, using quantitative and qualitative methods. Both patient cohorts were statistically indistinguishable in terms of symptom burden, emotional wellbeing, and quality-of-life scores. HF patients had good access to community and social support. HF patients particularly valued the close supervision, medication monitoring, ease of access to service, telephone support, and key worker provided at the HF unit. A small subset of patients had unmet PC needs. A palliative transition point is described. CONCLUSION: HF patients should not be excluded from specialist PC services. However, the majority of their needs can be met at a HF unit. Recognition of the palliative transition point may be key to ensuring that end-of-life issues are addressed. The palliative transition point needs further evaluation.

  19. Physical Therapy in Palliative Care: From Symptom Control to Quality of Life: A Critical Review

    OpenAIRE

    Kumar, Senthil P; Anand Jim

    2010-01-01

    Physiotherapy is concerned with identifying and maximizing movement potential, within the spheres of promotion, prevention, treatment and rehabilitation. Physical therapists practice in a broad range of inpatient, outpatient, and community-based settings such as hospice and palliative care centers where as part of a multidisciplinary team of care, they address the physical and functional dimensions of the patients′ suffering. Physiotherapy treatment methods like therapeutic exercise, electric...

  20. Stepped Skills: A team approach towards communication about sexuality and intimacy in cancer and palliative care

    OpenAIRE

    Hilde de Vocht; Amanda Hordern; Joy Notter; Harry van de Wiel

    2011-01-01

    BackgroundCancer often has a profound and enduring impact on sexuality, affecting both patients and their partners. Most healthcare professionals in cancer and palliative care are struggling to address intimate issues with the patients in their care.MethodsStudy 1: An Australian study using semi-structured interviews and documentary data analysis.Study 2: Building on this Australian study, using a hermeneutic phenomenological approach, data were collected in the Netherlands through interviewi...

  1. Music therapists’ practice-based research in cancer and palliative care: Creative methods and situated findings

    OpenAIRE

    Philippa Barry; Clare O'Callaghan

    2009-01-01

    Although randomized controlled trials are described as the gold standard in health care research, their superiority is being questioned in palliative care which is focused on addressing individualized needs to maximize life quality. We use creative practice-based research to examine the usefulness of our music therapy work amongst people with life threatening conditions. Examined voices include “collective” (patients, visitors, staff, and music therapist), "their” (patients or caregivers), "o...

  2. How Palliative Care Helped Me Make an Important Decision in My Life.

    Science.gov (United States)

    Nair, Bindu

    2015-01-01

    The author writes about her father's illness and how her knowledge of palliative care and "dying with dignity" helped her make important decisions for her father in his last days. She and her family members were able to give him the kind of care he needed and desired. He could enjoy the time he had left, and the family had the satisfaction of serving him when he needed them. PMID:26654415

  3. Nutritional support among cancer patients enrolled in palliative home care services

    OpenAIRE

    Orrevall, Ylva

    2008-01-01

    Nutritional problems are common in palliative cancer care. Little is known about nutritional problems and nutritional support in home care. AIMS: The primary aim of this thesis was to investigate experiences of nutritional problems and home nutritional support, with a special focus on home parenteral nutrition (HPN), from the perspectives of cancer patients and their family members. Further aims were to investigate the prevalence of nutritional risk and use of nutritional su...

  4. A qualitative exploration of the collaborative working between palliative care and geriatric medicine: Barriers and facilitators from a European perspective

    OpenAIRE

    Albers, Gwenda; Froggatt, K; Van den Block, L.; Gambassi, G.; Vanden Berghe, P.; Pautex, S.; Van Den Noortgate, N.; ,

    2016-01-01

    Background With an increasing number of people dying in old age, collaboration between palliative care and geriatric medicine is increasingly being advocated in order to promote better health and health care for the increasing number of older people. The aim of this study is to identify barriers and facilitators and good practice examples of collaboration and integration between palliative care and geriatric medicine from a European perspective. Methods Four semi-structured group interviews w...

  5. A qualitative exploration of the collaborative working between palliative care and geriatric medicine: Barriers and facilitators from a European perspective

    OpenAIRE

    Albers, Gwenda; Froggatt, Katherine; Van den Block, Lieve; Gambassi, Giovanni; Vanden Berghe, P.; Pautex, Sophie; Van Den Noortgate, Nele

    2016-01-01

    Background With an increasing number of people dying in old age, collaboration between palliative care and geriatric medicine is increasingly being advocated in order to promote better health and health care for the increasing number of older people. The aim of this study is to identify barriers and facilitators and good practice examples of collaboration and integration between palliative care and geriatric medicine from a European perspective. Methods Four semi-structured group ...

  6. Relationship of Clinical Nursing Competence to Nursing Occupational Experience in Hospice/Palliative Care Nurses in Japan

    OpenAIRE

    Kaori Tsutsumi; Keiko Sekido

    2015-01-01

    Aim: The purpose of this research is to examine the relationship between the clinical nursing competence and nursing occupational experience in hospice/palliative care nurses (HPN) in Japan. Methods: A mail survey using an anonymous self-administered questionnaire was conducted on clinical nursing competence regarding communication, care and prediction of worsening of symptoms with the authors’ previous research as a framework. The subjects were nurses working in hospice/palliative care units...

  7. ‘Life is still worth living’: a pilot exploration of self-reported resources of palliative care patients

    OpenAIRE

    Warmenhoven, Franca; Lucassen, Peter; Vermandere, Mieke; Aertgeerts, Bert; van Weel, Chris; Vissers, Kris; Prins, Judith

    2016-01-01

    Background Facing a terminal illness can be highly stressful and palliative care patients frequently suffer from mood symptoms. The focus of health care is often on treating symptoms whereas health-promoting factors receive less attention. The aim of this study was to explore the views of palliative care patients on resources and ways of coping that help them prevent or manage mood symptoms. Methods A pilot qualitative study was performed through face-to-face semi-structured interviews with f...

  8. ‘ Life is still worth living ’ : a pilot exploration of self-reported resources of palliative care patients

    OpenAIRE

    Warmenhoven, Franca; Lucassen, Peter; Vermandere, Mieke; Aertgeerts, Bert; van Weel, Chris; Vissers, Kris

    2016-01-01

    Background: Facing a terminal illness can be highly stressful and palliative care patients frequently suffer from mood symptoms. The focus of health care is often on treating symptoms whereas health-promoting factors receive less attention. The aim of this study was to explore the views of palliative care patients on resources and ways of coping that help them prevent or manage mood symptoms. Methods: A pilot qualitative study was performed through fac e-to-face semi-stru...

  9. Palliative radiotherapy with or without additional care by a multidisciplinary palliative care team in patients with newly diagnosed cancer: a retrospective matched pairs comparison

    International Nuclear Information System (INIS)

    To analyze survival after early palliative radiotherapy (RT) in patients managed exclusively by regular oncology staff or a multidisciplinary palliative care team (MPCT) in addition. Retrospective matched pairs analysis. Comparison of two groups of 29 patients each: MPCT versus none. Early RT started within three months after cancer diagnosis. Bone and brain metastases were common RT targets. No significant differences in baseline characteristics were observed between both groups. Twelve patients in each group had non-small cell lung cancer. Median performance status was 2 in each group. Twenty-seven patients in each group had distant metastases. Median survival was not significantly different. In multivariate analysis, MPCT care was not associated with survival, while performance status and liver metastases were. Rate of radiotherapy during the last month of life was comparable. Only one patient in each group failed to complete radiotherapy. MPCT care was not associated with survival in these two matched groups of patients. The impact of MPCT care on other relevant endpoints such as symptom control, side effects and quality of life should be investigated prospectively

  10. Maintaining the social flow of Evidence-Informed palliative care: Use and misuse of YouTube

    Directory of Open Access Journals (Sweden)

    Nisha Rani Jamwal

    2016-01-01

    Full Text Available This review article is aimed to explore the use of the social media website YouTube (www.youtube.com as an evidence resource in palliative care, for patients and caregivers, students and professionals, and providers and policy-makers in developing countries' settings. The reviewed evidence reiterated the role of this social media website in palliative care practice, education and research in the area of cancer. Efficacy studies on impact of such media on palliative care delivery in developing countries are still lacking.

  11. Maintaining the Social Flow of Evidence-Informed Palliative Care: Use and Misuse of YouTube.

    Science.gov (United States)

    Jamwal, Nisha Rani; Kumar, Senthil Paramasivam

    2016-01-01

    This review article is aimed to explore the use of the social media website YouTube (www.youtube.com) as an evidence resource in palliative care, for patients and caregivers, students and professionals, and providers and policy-makers in developing countries' settings. The reviewed evidence reiterated the role of this social media website in palliative care practice, education and research in the area of cancer. Efficacy studies on impact of such media on palliative care delivery in developing countries are still lacking. PMID:26962290

  12. Caring for Patients With Severe and Enduring Eating Disorders (SEED): Certification, Harm Reduction, Palliative Care, and the Question of Futility.

    Science.gov (United States)

    Westmoreland, Patricia; Mehler, Phillip S

    2016-07-01

    Anorexia nervosa is a serious mental illness with a high mortality rate. The body image distortion inherent to this disorder and the impaired judgment and cognition due to malnutrition frequently result in patients refusing treatment. Treatment is most effective if patients are treated early in the course of their illness and undergo a full course of treatment. Involuntary treatment may therefore be both life-saving and critical to recovery. Between April 2012 and March 2016, 109 patients (5.2% of patients admitted to the Eating Recovery Center in Denver, CO) were certified, 39% of whom were transferred from the ACUTE Center for Eating Disorders at Denver Health Medical Center. Of these 109 certified patients, 31% successfully completed treatment, and 42% returned for a further episode of care; 24% of the certifications were terminated as involuntary treatment was not found to be helpful. Conclusions supported by these data are that patients with anorexia nervosa who are the most medically ill often require involuntary treatment. In addition, although many patients who are certified successfully complete treatment, involuntary treatment is not helpful approximately 25% of the time. Many of the patients for whom certification is ineffective are those who suffer from a lifetime of illness that is severe and enduring. Patients with severe and enduring eating disorders (SEED) typically undergo cyclical weight restoration and weight loss. Many of these patients question the value of serial treatments, especially when they have few (if any) illness-free intervals. Patients, families, and treating physicians often wish to explore other models of care, including harm reduction and palliative care. In addition, patients with SEED may also contemplate whether a compassionate death would be better than an ongoing lifetime of suffering. In this review, we outline arguments for and against the concept of futility in SEED, and explore whether (or when) patients are competent to

  13. What's the diagnosis? Organisational culture and palliative care delivery in residential aged care in New Zealand.

    Science.gov (United States)

    Frey, Rosemary; Boyd, Michal; Foster, Sue; Robinson, Jackie; Gott, Merryn

    2016-07-01

    Organisational culture has been shown to impact on resident outcomes in residential aged care (RAC). This is particularly important given the growing number of residents with high palliative care needs. The study described herein (conducted from January 2013 to March 2014) examined survey results from a convenience sample of 46 managers, alongside interviews with a purposively selected sample of 23 bereaved family members in order to explore the perceptions of organisational culture within New Zealand RAC facilities in one large urban District Health Board. Results of the Organisational Culture Assessment Instrument (OCAI) completed by managers indicated a preference for a 'Clan' and the structured 'Hierarchy' culture. Bereaved family interviews emphasised both positive and negative aspects of communication, leadership and teamwork, and relationship with residents. Study results from both managers' OCAI survey scores and next of kin interviews indicate that while the RAC facilities are culturally oriented towards providing quality care for residents, they may face barriers to adopting organisational processes supportive of this goal. PMID:25808936

  14. Music therapists’ practice-based research in cancer and palliative care: Creative methods and situated findings

    Directory of Open Access Journals (Sweden)

    Philippa Barry

    2009-11-01

    Full Text Available Although randomized controlled trials are described as the gold standard in health care research, their superiority is being questioned in palliative care which is focused on addressing individualized needs to maximize life quality. We use creative practice-based research to examine the usefulness of our music therapy work amongst people with life threatening conditions. Examined voices include “collective” (patients, visitors, staff, and music therapist, "their” (patients or caregivers, "our” (a group of music therapists, and "my voice” (one music therapist. Data sources have included clinical journals, semi-structured questionnaires, interview responses, a focus group, reflexive groupwork supervision transcripts, and patients’ song lyrics. Findings, situated within varied theoretic lenses, substantiate music therapy’s role in oncology and palliative care settings. Readers are invited to devise creative ways to voice their clients’, bystanders’, and own wisdom about music therapy to meaningfully extend the knowledge base.

  15. Opinion Piece: honouring the wishes of a dying patient: from intensive care to home with palliative care.

    Science.gov (United States)

    Campbell, Lynette

    2013-10-01

    Due to the severity of illness, death is not uncommon in intensive care units (ICU). Unfortunately, a major percentage of deaths in ICU are patients diagnosed with a terminal disease. Initiating discussions on the transition from curative care to palliative care can be stressful for doctors, patients and families. The challenge for doctors, is to maintain open communication and shared-decision making with patients and family members at this very sensitive time. This can be challenging due to the culture of ICU which focuses on saving lives rather than palliation. Facilitating discussions for terminally ill patients in ICU may enhance their end-of-life care and assist patients to die in an environment of their choice such as their home. PMID:24299256

  16. Palliative and Supportive Care in Acrometastasis to the Hand: Case Series

    Directory of Open Access Journals (Sweden)

    Narendra Kumar

    2011-01-01

    Full Text Available Acrometastasis to the hand is an unusual presentation which might mimic an infectious, inflammatory, or a metabolic pathology. We herein describe a case series of three patients of acrometastasis to the hand. We encountered three cases of acrometastasis to the hand attending the departmental clinics from 2007 to 2010. The median age at presentation was noted to be 55 years. All were males. The primaries included squamous cell carcinoma of the skin, larynx, and esophagus. In two patients, acrometastasis was detected at presentation and in one it was detected 2 years postcompletion of radical therapy. Two patients were offered palliative radiation to acrometastasis, and best supportive care was given to one. Palliation achieved after radiation was noted to be modest to good. The brief report highlights the importance of the clinical awareness of metastatic dissemination to unusual sites in the face of increasing cancer survivorship. Acrometastasis portends a poor prognosis with limited survival, and optimal integration of the best supportive care is mandatory. A short course of hypofractionated palliative radiation therapy results in modest to good palliation.

  17. Incorporating Palliative Care Concepts Into Nutrition Practice: Across the Age Spectrum.

    Science.gov (United States)

    Schwartz, Denise Baird; Olfson, Kristina; Goldman, Babak; Barrocas, Albert; Wesley, John R

    2016-06-01

    A practice gap exists between published guidelines and recommendations and actual clinical practice with life-sustaining treatments not always being based on the patient's wishes, including the provision of nutrition support therapies. Closing this gap requires an interdisciplinary approach that can be enhanced by incorporating basic palliative care concepts into nutrition support practice. In the fast-paced process of providing timely and effective medical treatments, communication often suffers and decision making is not always reflective of the patient's quality-of-life goals. The current healthcare clinical ethics model does not yet include optimum use of advance directives and early communication between patients and family members and their healthcare providers about treatment choices, including nutrition support. A collaborative, proactive, integrated process in all healthcare facilities and across levels of care and age groups, together with measurable sustained outcomes, shared best practices, and preventive ethics, will be needed to change the culture of care. Implementation of a better process, including basic palliative care concepts, requires improved communication skills by healthcare professionals. Formalized palliative care consults are warranted early in complex cases. An education technique, as presented in this article, of how clinicians can engage in critical and crucial conversations early with patients and family members, by incorporating the patient's values and cultural and religious diversity in easily understood language, is identified as an innovative tool. PMID:26888858

  18. Writing information transfers for out-of-hours palliative care: a controlled trial among GPs

    Science.gov (United States)

    Schweitzer, Bart; Blankenstein, Nettie; Slort, Willemjan; Knol, Dirk L.; Deliens, Luc; Van Der Horst, Henriette

    2016-01-01

    Objective The aim was to evaluate the effect of the implementation of an information handover form regarding patients receiving palliative care. Outcome was the information available for the out-of-hours GP co-operative. Design We conducted a controlled trial. Setting All GPs in Amsterdam, The Netherlands. Intervention The experimental group (N = 240) received an information handover form and an invitation for a one-hour training, the control group (N =  186) did not receive a handover form or training. We studied contacts with the GP co-operative concerning patients in palliative care for the presence and quality of information transferred by the patient's own GP. Main outcome measures Proportion of contacts in which information was available and proportion of adequate information transfer. Results. Overall information was transferred by the GPs in 179 of the 772 first palliative contacts (23.2%). The number of contacts in the experimental group in which information was available increased significantly after intervention from 21% to 30%, compared to a decrease from 23% to 19% in the control group. The training had no additional effect. The content of the transferred information was adequate in 61.5%. There was no significant difference in the quality of the content between the groups. Conclusion The introduction of a handover form resulted in a moderate increase of information transfers to the GP co-operative. However, the total percentage of contacts in which this information was present remained rather low. GP co-operatives should develop additional policies to improve information transfer. Key points The out-of-hours period is potentially problematic for the delivery of optimal palliative care, often due to inadequate information transfer. Introduction of a handover form resulted in a moderate increase of transferred information. The percentage of palliative contacts remained low in cases where information was available. Adequate information

  19. Palliative care for patients with malignancy and end-stage renal failure on peritoneal dialysis

    Directory of Open Access Journals (Sweden)

    Lv Jing

    2014-01-01

    Full Text Available Background: Many patients on peritoneal dialysis experience a poor quality of life because of a high burden of comorbid conditions. Dialysists must pay more attention to reducing a patient′s pain and suffering, both physical and psychological and improve the quality of life for the patients as much as possible. A consensus regarding eligibility for palliative care and the delivery of these inventions does not currently exist. Objective: The present study aimed to describe the implementation of palliative care for end-stage renal failure patients on peritoneal dialysis. Design: A report on three cases. Materials and Methods: This study included three outpatients on peritoneal dialysis who received palliative care and died between January 2008 and June 2010. Measurements: The patients′ comorbidities, nutritional status, and functional status were evaluated using the Charlson comorbidity score, subjective global assessment, and Karnofsky Performance Score index, respectively. The Hamilton depression and Hamilton anxiety scales were also employed. The patients′ clinical manifestations and treatments were reviewed. Results: Each patient displayed 11-16 symptoms. The Charlson comorbidity scores were from 11 to 13, the subjective global assessment indicated that two patients were class assigned to "C" and one to class "B", and the mean Karnofsky index was <40. Among these patients, all experienced depression and two experienced anxiety, Low doses of hypertonic glucose solutions, skin care, psychological services, and tranquillizers were intermittently used to alleviate symptoms, after making the decision to terminate dialysis. The patients died 5 days to 2 months after dialysis withdrawal. Conclusion: The considerable burden associated with comorbid conditions, malnutrition, poor functional status, and serious psychological problems are predictors of poor patient prognoses. Withdrawal of dialysis, palliative care, and psychological interventions

  20. GP and nurses' perceptions of how after hours care for people receiving palliative care at home could be improved: a mixed methods study

    OpenAIRE

    Miles Gail; O'Connor Margaret M; Tan Heather M; Klein Britt; Schattner Peter

    2009-01-01

    Abstract Background Primary health care providers play a dominant role in the provision of palliative care (PC) in Australia but many gaps in after hours service remain. In some rural areas only 19% of people receiving palliative care achieve their goal of dying at home. This study, which builds on an earlier qualitative phase of the project, investigates the gaps in care from the perspective of general practitioners (GPs) and PC nurses. Methods Questionnaires, developed from the outcomes of ...

  1. The Palliative-Supportive Care Unit in a Comprehensive Cancer Center as Crossroad for Patients’ Oncological Pathway

    Science.gov (United States)

    Mercadante, Sebastiano; Adile, Claudio; Caruselli, Amanda; Ferrera, Patrizia; Costanzi, Andrea; Marchetti, Paolo; Casuccio, Alessandra

    2016-01-01

    Aim The aim of this study was to assess how an admission to an acute palliative-supportive care unit (APSCU), may influence the therapeutic trajectory of advanced cancer patients. Methods A consecutive sample of advanced cancer patients admitted to APCU was assessed. The following parameters were collected: patients demographics, including age, gender, primary diagnosis, marital status, and educational level, performance status and reasons for and kind of admission, data about care-givers, recent anticancer treatments, being on/off treatment or uncertain, the previous care setting, who proposed the admission to APSCU. Physical and psychological symptoms were evaluated at admission and at time of discharge. The use of opioids was also recorded. Hospital staying was also recorded. At time of discharge the parameters were recorded and a follow-up was performed one month after discharge. Results 314 consecutive patients admitted to the APSCU were surveyed. Pain was the most frequent reason for admission. Changes of ESAS were highly significant, as well as the use of opioids and breakthrough pain medications (p patients was reported, and concomitantly a significant number of “off-therapy” patients increased. At one month follow-up, 38.9% patients were at home, 19.7% patients were receiving palliative home care, and 1.6% patients were in hospice. 68.5% of patients were still living. Conclusion Data of this study suggest that the APSCU may have a relevant role for managing the therapeutic trajectory of advanced cancer patients, limiting the risk of futile and aggressive treatment while providing an appropriate care setting. PMID:27332884

  2. Demographic profile and utilization statistics of a Canadian inpatient palliative care unit within a tertiary care setting

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    Napolskikh, J.; Selby, D.; Bennett, M.; Chow, E.; Harris, K; Sinclair, E.; Myers, J.

    2009-01-01

    Background Canadian data describing inpatient palliative care unit (pcu) utilization are scarce. In the present study, we performed a quality assessment of a 24-bed short-term pcu with a 3-months-or-less life expectancy policy in a tertiary care setting. Methods Using a retrospective chart review, we explored wait time (wt) for admission (May 2005 to April 2006), length of stay [los (February 2005 to January 2006)], and patient demographics. Results The wt data showed 508 referrals, with 242 ...

  3. The shift to early palliative care: a typology of illness journeys and the role of nursing.

    Science.gov (United States)

    Wittenberg-Lyles, Elaine; Goldsmith, Joy; Ragan, Sandra

    2011-06-01

    For the current study, clinical observations of communication between patients, families, and clinicians during chronic, serious, or terminal illness in a cancer care trajectory were examined for patterns and trends. Five communication characteristics were concluded, which informed a typology of illness journeys experienced by patients with cancer and their families. The isolated journey characterizes an illness path in which communication about terminal prognosis and end-of-life care options are not present; communication is restricted by a curative-only approach to diagnosis as well as the structure of medical care. The rescued journey signifies a transition between curative care (hospital narrative) to noncurative care (hospice narrative), challenging patients and their families with an awareness of dying. The rescued journey allows communication about prognosis and care options, establishes productive experiences through open awareness, and affords patients and families opportunities to experience end-of-life care preferences. Finally, palliative care prior to hospice provides patients and families with an illness journey more readily characterized by open awareness and community, which facilitates a comforted journey. Nurses play a pivotal role in communicating about disease progression and plans of care. The typology presented can inform a structured communication curriculum for nurses and assist in the implementation of early palliative care. PMID:21624865

  4. How useful are systematic reviews for informing palliative care practice? Survey of 25 Cochrane systematic reviews

    Directory of Open Access Journals (Sweden)

    Hadley Gina

    2008-08-01

    Full Text Available Abstract Background In contemporary medical research, randomised controlled trials are seen as the gold standard for establishing treatment effects where it is ethical and practical to conduct them. In palliative care such trials are often impractical, unethical, or extremely difficult, with multiple methodological problems. We review the utility of Cochrane reviews in informing palliative care practice. Methods Published reviews in palliative care registered with the Cochrane Pain, Palliative and Supportive Care Group as of December 2007 were obtained from the Cochrane Database of Systematic Reviews, issue 1, 2008. We reviewed the quality and quantity of primary studies available for each review, assessed the quality of the review process, and judged the strength of the evidence presented. There was no prior intention to perform any statistical analyses. Results 25 published systematic reviews were identified. Numbers of included trials ranged from none to 54. Within each review, included trials were heterogeneous with respect to patients, interventions, and outcomes, and the number of patients contributing to any single analysis was generally much lower than the total included in the review. A variety of tools were used to assess trial quality; seven reviews did not use this information to exclude low quality studies, weight analyses, or perform sensitivity analysis for effect of low quality. Authors indicated that there were frequently major problems with the primary studies, individually or in aggregate. Our judgment was that the reviewing process was generally good in these reviews, and that conclusions were limited by the number, size, quality and validity of the primary studies. We judged the evidence about 23 of the 25 interventions to be weak. Two reviews had stronger evidence, but with limitations due to methodological heterogeneity or definition of outcomes. No review provided strong evidence of no effect. Conclusion Cochrane reviews

  5. [Choice of Expiration for Cancer Patients under Home Medical Care - Palliative Care Unit or Home].

    Science.gov (United States)

    Okino, Takashi; Okagaki, Tetsuya; Nakamura, Hiromi; Okino, Akie

    2015-12-01

    Kohka Public Hospital(KPH)was rebuilt at a new place in April 2013. The Palliative Care Unit(PCU)was newly constructed during renovation. We examined the will and outcome of cancer patients, especially on expiration. A 123 patients died in 2014: 27 died at the PCU, and the remaining 7 at home. Of 27 patients, 20 were willing to die at the PCU, and one patient visited the hospital after judgment by the Visiting Nurse Center. Other 6 patients were admitted finally after their families experienced fatigue. Six of seven patients who died at home, showed a strong will to stay at home. We think that patients' will drives the clinical course, especially in their end-stage. In this context, the majority of the patients decided their terminal place based on their will. On the contrary, there were several cases whose requests were not fulfilled. To overcome the problem, we should discuss cancer patients' will to make a choice regarding death at the end-stage of their lives and the place of expiration in advance. We including the staff of social care and regional medical resources, should co-operate and share information on these patients to solve the problems. PMID:26809413

  6. Stepped Skills: A team approach towards communication about sexuality and intimacy in cancer and palliative care

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    Hilde de Vocht

    2011-11-01

    Full Text Available BackgroundCancer often has a profound and enduring impact on sexuality, affecting both patients and their partners. Most healthcare professionals in cancer and palliative care are struggling to address intimate issues with the patients in their care.MethodsStudy 1: An Australian study using semi-structured interviews and documentary data analysis.Study 2: Building on this Australian study, using a hermeneutic phenomenological approach, data were collected in the Netherlands through interviewing 15 cancer patients, 13 partners and 20 healthcare professionals working in cancer and palliative care. The hermeneutic analysis was supported by ATLAS.ti and enhanced by peer debriefing and expert consultation.ResultsFor patients and partners a person-oriented approach is a prerequisite for discussing the whole of their experience regarding the impact of cancer treatment on their sexuality and intimacy. Not all healthcare professionals are willing or capable of adopting such a person-oriented approach.ConclusionA complementary team approach, with clearly defined roles for different team members and clear referral pathways, is required to enhance communication about sexuality and intimacy in cancer and palliative care. This approach, that includes the acknowledgement of the importance of patients’ and partners’ sexuality and intimacy by all team members, is captured in the Stepped Skills model that was developed as an outcome of the Dutch study.

  7. Significances and meanings of the musical identity of patients and relatives receiving oncological palliative care

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    Vladimir Araujo de Silva

    2014-03-01

    Full Text Available This phenomenological study was structured on Heidegger’s theoretical-philosophical framework, with the objective of unveiling the significances and meanings of the musical identity of patients and relatives under oncological palliative care. Individual interviews were performed with 12 clients (seven patients and five relatives staying at the support residence of the Maringa Female Network Against Cancer. A total of eight musical meetings were performed between January and February of 2011. I understood that the musical identity of the evidenced beings refers to the religious and country music styles, that their significances and meanings are connected to their spirituality and the significant events of their historicity, and that their mood and reflection intermediated by music can influence their musical choice. I gave evidence to the need to consider the music identity and empowerment in musical choices, which carries existential, social, cultural, spiritual and family aspects as qualifying elements of nursing in palliative care. Descriptors: Nursing Care; Oncology Nursing; Music; Music Therapy; Palliative Care.

  8. Terms of the ICNP® used by the team of nurses assisting people in palliative care

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    Rudval Souza da Silva

    2015-06-01

    Full Text Available The aim of this study was to identify the terms that characterize specific nursing jargon, used by the nursing team at the intensive care unit of an oncology hospital when assisting people in palliative care, as well as mapping them alongside with the 7-Axis Model of the ICNP® 2011. This study was conducted between January and April 2013 through interviews with the nursing team professionals. The terms that characterize assistance to people in palliative care were identified in the interviews and later grouped together. Once the mapping was finished, 432 terms were identified. After the terms had been standardized, we applied cross-mapping and identified the terms that were either listed or not listed in the ICNP® 2011. We found 167 listed terms and 95 that were not listed. The development of this study allowed to learn the terms used by the nursing team when assisting people in palliative care, which will enable further contributions to the terminology of this area.

  9. "They should come out here ...": research findings on lack of local palliative care services for Australian aboriginal people.

    Science.gov (United States)

    McGrath, Pam; Holewa, Hamish; Kail-Buckley, Stasia

    2007-01-01

    Although Aboriginal Australians experience morbidity and mortality rates far greater than that of the wider Australian population, to date, their access to culturally appropriate palliative care services has remained unexplored. This article provides findings from an Australian National Health and Medical Research funded study that documents the availability of palliative care services to Aboriginal peoples of the Northern Territory, Australia. The data were collected through a series of open-ended, qualitative interviews with a cross section of Aboriginal peoples and health professionals conducted during a 2-year period. The findings provide an overview of the palliative care services that are presently available and reflect a serious lack of local, culturally appropriate palliative care services. This research shows the similarities in the struggles and difficulties faced by Australian Aboriginals and Indigenous peoples worldwide. The hope is that the suggestions put forward for improvement will one day be useful for the world's Indigenous peoples. PMID:17502434

  10. Best practices in developing a national palliative care policy in resource limited settings: lessons from five African countries.

    Science.gov (United States)

    Luyirika, Emmanuel Bk; Namisango, Eve; Garanganga, Eunice; Monjane, Lidia; Ginindza, Ntombi; Madonsela, Gugulethu; Kiyange, Fatia

    2016-01-01

    Given the high unmet need for palliative care in Africa and other resource limited settings, it is important that countries embrace the public health approach to increasing access through its integration within existing healthcare systems. To give this approach a strong foundation that would ensure sustainability, the World Health Organisation urges member states to ensure that policy environments are suitable for this intervention. The development, strengthening, and implementation of national palliative care policies is a priority. Given the lack of a critical mass of palliative care professionals in the region and deficiency in documenting and sharing best practices as part of information critical for regional development, policy development becomes a complex process. This article shares experiences with regard to best practices when advocating the national palliative care policies. It also tells about policy development process, the important considerations, and cites examples of policy content outlines in Africa. PMID:27563347

  11. End-of-life and palliative home care

    OpenAIRE

    Wilson, Donna

    2012-01-01

    This video clip comprises one of the 3 presentations of Panel Session, “Pan Canadian Policy Perspectives on Home Care" held at the 21st Annual John K. Friesen Conference, "Innovations in Home Care: A Public Policy Perspective," MAY 16-17, 2012, Vancouver, BC. Presented by Donna Wilson, Professor, Faculty of Nursing, University of Alberta. It is well known that jurisdictions with more comprehensive and integrated home care delivery systems are able to extend independent living for older peo...

  12. Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study

    OpenAIRE

    Krug, Katja; Miksch, Antje; Peters-Klimm, Frank; Engeser, Peter; Szecsenyi, Joachim

    2016-01-01

    Background: Family caregivers play a key role in palliative care at home, and understanding the interdependencies in the constellation of patient, family caregivers and service providers is important. As few longitudinal studies have examined the influence of patient quality of life (QoL) in palliative care on burden of family caregivers, the aim of this study was to identify correlations between changing patient QoL and changing burden of family caregivers that need consideration in patient ...

  13. Palliative care for people living with HIV/AIDS in Uganda: investigation of patients and caregivers' outcome and professional perspectives

    OpenAIRE

    Too, Wesley

    2011-01-01

    Background: Although antiretroviral treatment is expanding in sub-Saharan Africa, the World Health Organization advocates for integration of palliative care with HAAR T because pain, other distressing symptoms and complex psychosocial challenges persist throughout the HIV trajectory. Palliative care improves the outcome for patients with HIV and may complement antiretroviral treatment by increasing adherence through better management of side effects from the treatment, providing patient and f...

  14. Using Edward de Bono's six hats game to aid critical thinking and reflection in palliative care.

    Science.gov (United States)

    Kenny, Lesley J

    2003-03-01

    This article describes the use of a creative thinking game to stimulate critical thinking and reflection with qualified health professionals undertaking palliative care education. The importance of reflective practice in nursing is well documented and numerous models are available. However, the author as a nurse teacher has found that many of these models are either too simple or too complex to be valuable in practice. The six hats game, devised by Edward de Bono, is a method that stimulates a variety of types of thinking and when used as a means of reflection helps students to become more critical about their practice. Using this game with a palliative care case study the author demonstrates how thinking more creatively about the patients' perceived needs and problems can assist in developing reflective skills. The article concludes with a discussion on some of the challenges of using this method and suggestions for future practical uses. PMID:12682572

  15. Palliative Chemotherapy.

    Science.gov (United States)

    Matzo, Marianne

    2016-06-01

    This article is the first in a series on palliative care developed in collaboration with the Hospice and Palliative Nurses Association (HPNA; http://hpna.advancingexpertcare.org). The HPNA aims to guide nurses in preventing and relieving suffering and in giving the best possible care to patients and families, regardless of the stage of disease or the need for other therapies. The HPNA offers education, certification, advocacy, leadership, and research. PMID:27227867

  16. Impact of Palliative Care Consultation Service on Terminally Ill Cancer Patients: A 9-Year Observational Cohort Study in Taiwan.

    Science.gov (United States)

    Lu, Ching-Yi; Shen, Wen-Chi; Kao, Chen-Yi; Wang, Hung-Ming; Tang, Shu-Chuan; Chin, Tsu-Ling; Chi, Chuan-Chuan; Yang, Jin-Mei; Chang, Chih-Wen; Lai, Ying-Fen; Yeh, Ya-Chi; Hung, Yu-Shin; Chou, Wen-Chi

    2016-03-01

    The palliative care consultation service (PCCS) that has been enthusiastically promoted in Taiwan since 2005 was designed to provide comprehensive end-of-life care for terminally ill patients with qualified interdisciplinary specialists in acute care ward setting. This study aims to evaluate the impact of PCCS on terminally ill cancer patients.A total of 10,594 terminal cancer patients who were referred to PCCS from a single medical center in Taiwan between 2006 and 2014 were enrolled. The percentages of patients' and their families' disease awareness, do-not-resuscitate (DNR) designation, refusal and acceptance of palliative care among terminally ill cancer patients were analyzed retrospectively.At the beginning of PCCS, the percentages of disease awareness among patients and their family were increased from 25.4% to 37.9% (P = 0.007) and from 61.2% to 84.7% between 2006 and 2014 (P = 0.001), respectively. Patients' disease awareness after PCCS referral between 2006 and 2014 was increased from 47.1% to 64.5% (P = 0.016). Family's awareness of diagnosis and prognosis after PCCS referral researched to a steady plateau, 94.1% to 97.8% in different year cohort (P = 0.34). The percentage of DNR designation rate at the beginning of PCCS (in 2006) was 15.5%, and the designation rate was increased annually and finally reached to 42.0% in 2014 (P = 0.004). The percentage of DNR consents after PCCS was also improved from 44.0% in 2006 up to 80.0% in 2014 (P = 0.005). PCCS refusal rate decreased gradually and dropped to 1.6% in 2014 (P = 0.005). The percentage of PCCS utilization was increased 5-fold during the 9-year period after the promotion of PCCSIn the program of PCCS promotion, an increasing trend of PCCS utilization, better patients' and their families' awareness of diagnosis and prognosis, more consent to DNR, more patients were discharged with stable condition at the end of PCCS and a decrease refusal rate of end-of-life palliative care

  17. Palliative care in Parkinson′s disease: Role of cognitive behavior therapy

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    Samput Mallick

    2009-01-01

    Full Text Available Background : Parkinson′s disease (PD is a chronic, progressive, neurodegenerative disorder that leads to the classic features of akinesia (encompassing hypokinesia and bradykinesia, tremor, rigidity and postural instability. Other non-motor complications include depression, fatigue, pain, and sleep disturbances. For the management of these complications, non-pharmacological techniques, such as Cognitive-behavioral therapy (CBT can be used. This can focus on overt behavior and underlying cognitions and train the patient in coping strategies to obtain better symptom control. Objectives: To review studies on CBT as palliative care in PD patients. Materials and Methods: A survey was conducted for all available English-language studies by means of a MEDLINE search. Keywords in the searches included Parkinson′s disease, palliative care, and cognitive behavior therapy. All articles that reported the cognitive behavior therapy and palliative care in a group of PD patients regardless of the method used by the researchers were identified and analyzed. Result and Conclusion: CBT has a strong evidence base for its use and has proven to be an effective treatment in management of people with chronic pain, fatigue syndrome, depression and sleep disturbances, with efficacy that lasts beyond the duration of treatment. Although PD patients suffer from these complications, there are only a few studies on administration of CBT on them. Considering its effectiveness, CBT can be used as an option for palliative care for PD patients, directed toward improving the patient′s functional status, clinical disability and quality of life. Further studies are required in this area.

  18. Families’ Perspectives of Quality of Life in Pediatric Palliative Care Patients

    OpenAIRE

    Erin Mary Gaab

    2015-01-01

    Medical and academic institutions began prioritizing Pediatric Palliative Care (PPC) less than two decades ago. Although policies and institutions claim to improve the Quality of Life (QoL) of PPC patients and their families, family-defined QoL remains ambiguous. This research investigates the definitions of QoL for PPC patients according to their primary caregivers. We conducted qualitative, semi-structured focus groups of the primary caregivers of PPC patients. The transcripts were analysed...

  19. Rapid spread of complex change: a case study in inpatient palliative care

    OpenAIRE

    Filipski Marta I; Rice Jennifer; Neuwirth Esther B; Martel Helene; Penna Richard; Green Jennifer; Bellows Jim

    2009-01-01

    Abstract Background Based on positive findings from a randomized controlled trial, Kaiser Permanente's national executive leadership group set an expectation that all Kaiser Permanente and partner hospitals would implement a consultative model of interdisciplinary, inpatient-based palliative care (IPC). Within one year, the number of IPC consultations program-wide increased almost tenfold from baseline, and the number of teams nearly doubled. We report here results from a qualitative evaluati...

  20. A pilot study of palliative care provider self-competence and priorities for education in Kenya

    OpenAIRE

    Sedillo, R; Openshaw, MM; Cataldo, J; Donesky, D; McGowan Boit, J; Tarus, A; Thompson, LM

    2015-01-01

    © 2015, Lippincott Williams and Wilkins. All rights reserved. This study explored palliative care provider self-competence and priorities for future education in an inpatient hospice setting in Kenya. Self-competence scores for clinical skills and patient and family communication skills were hypothesized to differ according to provider type. A descriptive, cross-sectional study design was piloted at Kimbilio Hospice, a 26-bed rural, inpatient facility in Kenya. A quantitative survey instrumen...