WorldWideScience

Sample records for acute palliative care

  1. Palliative Care

    Science.gov (United States)

    Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...

  2. A day in the life: a case series of acute care palliative medicine--the Cleveland model.

    Science.gov (United States)

    Lagman, Ruth; Walsh, Declan; Heintz, Jessica; Legrand, Susan B; Davis, Mellar P

    2008-01-01

    Palliative care in advanced disease is complex. Knowledge and experience of symptom control and management of multiple complications are essential. An interdisciplinary team is also required to meet the medical and psychosocial needs in life-limiting illness. Acute care palliative medicine is a new concept in the spectrum of palliative care services. Acute care palliative medicine, integrated into a tertiary academic medical center, provides expert medical management and specialized care as part of the spectrum of acute medical care services to this challenging patient population. The authors describe a case series to provide a snapshot of a typical day in an acute care inpatient palliative medicine unit. The cases illustrate the sophisticated medical care involved for each individual and the important skill sets of the palliative medicine specialist required to provide high-quality acute medical care for the very ill.

  3. 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.

  4. 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 ...

  5. 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.

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

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    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.

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

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    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.

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

    Science.gov (United States)

    Damani, Anuja; Ghoshal, Arunangshu; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann

    2015-01-01

    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.

  10. 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.

  11. What is palliative care?

    Science.gov (United States)

    ... Living Wills: A Guide to Advance Directives, the Health Care Power of Attorney, and Other Key Documents . Cambridge, MA: Harvard Health Publications. 2013. Oxenham D. Palliative care and pain. ...

  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 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

  14. Identifying Patients in the Acute Psychiatric Hospital Who May Benefit From a Palliative Care Approach.

    Science.gov (United States)

    Burton, M Caroline; Warren, Mark; Cha, Stephen S; Stevens, Maria; Blommer, Megan; Kung, Simon; Lapid, Maria I

    2016-04-01

    Identifying patients who will benefit from a palliative care approach is the first critical step in integrating palliative with curative therapy. Criteria are established that identify hospitalized medical patients who are near end of life, yet there are no criteria with respect to hospitalized patients with psychiatric disorders. The records of 276 consecutive patients admitted to a dedicated inpatient psychiatric unit were reviewed to identify prognostic criteria predictive of mortality. Mortality predictors were 2 or more admissions in the past year (P = .0114) and older age (P = .0006). Twenty-two percent of patients met National Hospice and Palliative Care Organization noncancer criteria for dementia. Palliative care intervention should be considered when treating inpatients with psychiatric disorders, especially older patients who have a previous hospitalization or history of dementia.

  15. Integrating Palliative Care into Primary Care.

    Science.gov (United States)

    Gorman, Rosemary D

    2016-09-01

    Improved quality of life, care consistent with patient goals of care, and decreased health care spending are benefits of palliative care. Palliative care is appropriate for anyone with a serious illness. Advances in technology and pharmaceuticals have resulted in increasing numbers of seriously ill individuals, many with a high symptom burden. The numbers of individuals who could benefit from palliative care far outweighs the number of palliative care specialists. To integrate palliative care into primary care it is essential that resources are available to improve generalist palliative care skills, identify appropriate patients and refer complex patients to specialist palliative care providers.

  16. 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.

  17. Center to Advance Palliative Care

    Science.gov (United States)

    ... Catalogue Membership Brochure Join CAPC Central Registry National Palliative Care Registry™ Enter your data to improve performance, prove ... Log In to register Billing for Community-Based Palliative Care Virtual Office Hour Anne E. Monroe, MHA October ...

  18. [Palliative care in heart failure].

    Science.gov (United States)

    Gavazzi, Antonello; Svanoni, Fausto; De Maria, Renata

    2012-12-01

    The natural history of heart failure (HF) is characterized by a progressive decline in functional capacity, punctuated by acute heart destabilization episodes which contribute to a spiraling worsening course. Advanced HF affects one in four patients who are referred to the hospital for the syndrome and has an estimated yearly incidence of 12 000 new cases in Italy. Life expectancy is very limited, and in general less than 50% of advanced HF patients are alive at 1-2 years. Advanced HF patients show a high, not modifiable mortality, severe symptoms and impaired quality of life. Treatment goals should focus on the improvement of symptoms and quality of life, the aims of palliative care. Palliative consultations during hospital admissions reduce the number of interventions and procedures in the last stages of life, the length of stay in the intensive care unit and general ward. HF patients who receive home palliative care are more likely to die at home, in accordance with their expressed will. The research project RF-MAR-2007-67955 aims to analyze, through a prospective observational registry, the palliative care needs of HF patients in Italy, to answer the gaps in knowledge on symptom changes during the terminal stages of the disease, on the quality of communication between healthcare professionals, patients and their families and caregivers' needs.

  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. 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...

  1. 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....

  2. 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...... 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...

  3. [Palliative care for glioblastoma].

    Science.gov (United States)

    Dieudonné, Nathalie; De Micheli, Rita; Hottinger, Andreas

    2016-04-27

    Patients with glioblastoma have a limited life expectancy and an impaired quality of life and they should be offered palliative care soon after the diagnosis is established. Still, only a quarter of patients aged over 65 return home or medical institution after completing treatments. Home care must be promoted by coordinating assistance and care, combining disciplines such as physiotherapy and ergotherapy, medical and nursing care and psychosocial support. Patients are at risk of mood, personality and behavioural disorders. Limited awareness of these troubles and their physical limitations alter their capacity of rehabilitation and social relationships. Isolation of relatives, exhaustion and misunderstandings should be prevented. The therapeutic goals should be discussed and determined upstream to anticipate difficulties and questions concerning end of life. PMID:27281945

  4. 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 ...

  5. 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.

  6. 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

  7. 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...... 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........ 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...

  8. 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.

  9. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 242 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  10. Pediatric Palliative Care: A Personal Story

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    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 ...

  11. Pediatric Palliative Care: A Personal Story

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    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 ...

  12. 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. ...

  13. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 243 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  14. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 248 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  15. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 247 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  16. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 250 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  17. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 246 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  18. Pediatric Palliative Care: A Personal Story

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    ... Queue __count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 270 ... patient—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

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    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 249 ... 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

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    Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 241 ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...

  1. Pain management: lessons from palliative care.

    Science.gov (United States)

    Langlois, John P

    2013-01-01

    Reducing suffering and helping patients to control their symptoms are key components of palliative care. This commentary will offer a comprehensive definition of palliative care and will present a case history to illustrate how palliative care can benefit patients with chronic pain.

  2. 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

  3. Analgesic prescribing in palliative care.

    Science.gov (United States)

    Lowe, Emma; Hanchanale, Sarika; Hurlow, Adam

    2014-12-01

    Pain management requires a multimodal approach involving pharmacological and non-pharmacological strategies. It is important to take a detailed history and examine the patient before prescribing any analgesia. This article focuses on assessment and management of pain in palliative care patients.

  4. Renal palliative care.

    Science.gov (United States)

    Cohen, Lewis M; Moss, Alvin H; Weisbord, Steven D; Germain, Michael J

    2006-08-01

    Patients with chronic kidney disease have a shortened life expectancy and carry a high symptom burden. Clinicians need sophisticated expertise in pain and symptom management and skills in communication to meet the many needs of this population. This article reviews the literature and discusses prognosis, ethical and legal considerations, symptoms, treatment, and end-of-life issues. The field of nephrology is shifting from an exclusive focus on increasing survival to one that provides greater attention to quality of life. There is an opportunity to integrate many of the advances of palliative medicine into the comprehensive treatment of these patients.

  5. 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...

  6. 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.

  7. Spirituality, religion and palliative care.

    Science.gov (United States)

    Richardson, Patrice

    2014-07-01

    As medical science has evolved, many conditions that once were thought to be "death sentences" have become chronic illness. In some ways, this makes death and dying more complicated, fraught with decisions about what care is appropriate and when to withhold or withdraw care. Studies have shown that most patients faced with life-threatening illness have spiritual needs that are not adequately addressed by their health care providers. The philosophy and practice of palliative care operates upon an understanding of whole person care, reflected in the muli-dimensional approach of the biopsychosocial model. One cannot provide whole-person care without giving consideration to the relevant spiritual needs held by patients with serious illness. As palliative care clinicians, we are uniquely positioned to work with teams/patients/families to explore the many variables that individuals and their families use as the guiding principles when making difficult decisions around end of life. While we are often consulted to manage physical symptoms, that is only part of our work. As we work on building relationships, both with our patients and their care team, we are often able to help facilitate communication that allows for mutually satisfactory goal setting. We are equipped to work with patients within their cultural contexts of which spirituality is a part. It is important to recognize the barriers to providing adequate spiritual care. The National Consensus Project has created clinical practice guidelines to provide a road map for the provision of quality palliative care. These guidelines delineate eight domains that are addressed through the provision of palliative care; the fifth domain gives attention to spiritual, religious and existential aspects of care. Guidelines recommend the use of standardized tools wherever possible to assess spiritual needs; referral to members of the interdisciplinary team who have specialized skills in addressing existential and spiritual

  8. 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

  9. 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 ...

  10. 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

  11. Palliative wound care: principles of care.

    Science.gov (United States)

    Dale, Barbara; Emmons, Kevin R

    2014-01-01

    Home care nursing occurs in a complex care environment. Nurses working in this setting care for a wide array of individuals who often are sicker and more complex than ever before. The high prevalence of wounds among these individuals requires that home care nurses have a certain level of knowledge to provide excellent care. Many times, individuals with wounds do not have the capacity to heal or are burdened with numerous symptoms affecting quality of life. In these cases, the home care nurse must understand concepts of palliative wound care to alleviate symptoms with the goal of improving quality of life.

  12. 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.

  13. Working with a palliative care team.

    Science.gov (United States)

    Wiebe, Lauren A; Von Roenn, Jamie H

    2010-01-01

    The interdisciplinary team is fundamental to the successful delivery of quality palliative care. Ideally, the oncologist is an integral part of either the palliative care or hospice team and serves to maintain continuity of care through the end of life. In the United States, barriers can complicate the oncologist's easy integration into the hospice team as patients often remain at home. Also, there may be philosophical or clinical practice differences between oncology and palliative care at first glance. This article focuses on ways to overcome these potential obstacles and use differences in training to strengthen the team's impact. A significant part of oncology practice includes managing difficult symptoms, mitigating suffering, and discussing priorities of care--all elements of palliative medicine that oncologists perform daily. Participating on a palliative care team may be natural for oncologists, and some might elect to provide integrated palliative cancer care for patients throughout the course of their disease and at the end of life. Thus, there is a need to enrich the general oncologist's knowledge of specialized palliative medicine, as recommended by the major cancer organizations, including the American Society of Clinical Oncology and the European Society of Medical Oncology.It is important to know when to incorporate a palliative or hospice care team into the routine management of a cancer patient and what benefits these referrals can provide. Oncologists have an obligation to provide high-quality palliative care to all patients in an integrated fashion, including patients with advanced cancer enrolled in clinical trials for early therapeutics.

  14. 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

  15. 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...

  16. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Reserve 6,185 views 12:07 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: ... havoctrend 4,258,570 views 1:09:38 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. ...

  17. Pediatric Palliative Care: A Personal Story

    Medline Plus

    Full Text Available ... Reserve 6,028 views 12:07 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: ... Karen Fauman 1,238 views 1:05:13 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. ...

  18. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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: ...

  19. 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.

  20. Palliative care in chronic obstructive pulmonary disease.

    Science.gov (United States)

    Lilly, Evan J; Senderovich, Helen

    2016-10-01

    Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development.

  1. Growing Pains: Palliative Care Making Gains

    Science.gov (United States)

    An article about the growth of palliative care, a medical subspecialty that has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care.

  2. 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.)

  3. 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.)

  4. In the sandbox: palliative care and hematologic malignancies.

    Science.gov (United States)

    LeBlanc, Thomas W

    2014-02-01

    Palliative care specialists have had little involvement in the care of patients with hematologic malignancies. The reasons for this are not clear, because these patients certainly face a significant symptom burden, and many hematologic malignancies are either incurable or carry poor prognoses. For example, acute myeloid leukemia (AML) in patients over age 60 has a 5-year survival of less than 10%, akin to pancreatic cancer. Although most oncologists would agree with involving palliative care specialists in the case of advanced pancreatic cancer, few seem to consider this in the context of AML. Why should AML be any different?

  5. 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

  6. 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

  7. 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

  8. 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…

  9. [Introduction to palliative care for the oncologist-history and basic principles of palliative care].

    Science.gov (United States)

    Shima, Yasuo

    2010-10-01

    The basic principle of palliative care has evolved over time and is the historical origin of the modern hospice. WHO proposed the first definition of palliative care in 1989, and the definition was revised in 2002. These definitions have something in common. Both relieve the pain and suffering to improve QOL. Palliative care is also good for any kind of life-threatening disease, regardless of whether it requires short or long term recuperation. That also need to be able to accept equally all the people of the community. The provision of general palliative care is the responsibility of all medical, nursing, and health professionals for the welfare of all patients with life-threatening disease. Specialist palliative care is based on the basic principles of palliative care, intensive clinical training, and systematic acquisition of knowledge and skills training to support palliative care education, clinical research and training provided by the profession. It has been established by nursing and medical experts in palliative care that palliative care can provide expertise in interdisciplinary teams in different settings. It is necessary that the medical system.

  10. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  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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    Full Text Available ... total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 242 242 ... later? Sign in to add this video to a playlist. Sign in Share More Report Need to ...

  13. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 241 241 ... later? Sign in to add this video to a playlist. Sign in Share More Report Need to ...

  14. Pediatric Palliative Care: A Personal Story

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    Full Text Available ... total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Subscribe Subscribed Unsubscribe 240 240 ... later? Sign in to add this video to a playlist. Sign in Share More Report Need to ...

  15. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  16. 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...

  17. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  18. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 - ...

  19. Integrating palliative care with usual care of diabetic foot wounds.

    Science.gov (United States)

    Dunning, Trisha

    2016-01-01

    Palliative care is a philosophy and a system for deciding care and can be used alone or integrated with usual chronic disease care. Palliative care encompasses end-of-life care. Palliative care aims to enhance quality of life, optimize function and manage symptoms including early in the course of chronic diseases. The purposes of this article are to outline palliative care and discuss how it can be integrated with usual care of diabetic foot wounds. Many people with diabetes who have foot wounds also have other comorbidities and diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, functional status, surgical risk and quality of life. Two broad of diabetic foot disease exist: those likely to heal but who could still benefit from integrated palliative care such as managing pain and those where healing is unlikely where palliation can be the primary focus. People with diabetes can die suddenly, although the life course is usually long with periods of stable and unstable disease. Many health professionals are reluctant to discuss palliative care or suggest people to document their end-of-life care preferences. If such preferences are not documented, the person might not achieve their desired death or place of death and health professionals and families can be confronted with difficult decisions. Palliative care can be integrated with usual foot care and is associated with improved function, better quality of life and greater patient and family satisfaction.

  20. 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

  1. [Neonatal palliative care and culture].

    Science.gov (United States)

    Bétrémieux, P; Mannoni, C

    2013-09-01

    The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality.

  2. 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

  3. 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.

  4. 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

  5. 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.

  6. Palliative care. Some organisational considerations.

    Science.gov (United States)

    Welshman, A

    2005-01-01

    Managing pain effectively is one of the biggest challenges in medicine, let alone when dealing with the dying patient and his family. For palliative care specialists this is a daily challenge. However, ''To cure when possible, to give comfort always'' is an empty credo if physicians don't use every weapon in the medical arsenal to relieve the suffering caused by chronic pain. It's of course the opioids: morphine, heroin, their synthetic derivatives and other narcotics, a class of medications that conjure up visions of drug addiction and narcotic squads. To say that opioids are stigmatised by such allusions is putting it mildly. An unhealthy proportion of doctors and patients alike are afraid to have anything to do with them, even in when facing their final stages of life. This is particularly so in the Mediterranean society. It is here in Italy that an effort must be made to educate both physicians and the general public, an arduous task to change a long standing belief which requires a quick cultural turn around. Those who refuse opioids because they are afraid of addiction, and the doctors who refuse to prescribe them out of fear or pure unwillingness to address an apprehensive attitude on behalf of his patient, need to be better informed. Most misconceptions about opioids have to do with terminology, because words like ''morphine, addiction, dependency'' and ''tolerance'' mean entirely different things in popular and medical parlance. Add to this the perceptions and attitudes the patient can have with this terminology which then can have a profound effect on the success or failure of a pain control programme. In fact, most people think that medication such as morphine are only for people who are dying and as a consequence is synonymous with death itself. Is this why Italian physicians are not prescribing morphine even though great efforts have been made recently by the Health Ministry to facilitate prescribing laws and costs? It is worthy of serious

  7. 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.

  8. [Seeds of palliative care: nurses' discourse order].

    Science.gov (United States)

    da Silva, Karen Schein; Kruse, Maria Henriqueta Luce

    2009-06-01

    Palliative care is becoming a professional knowledge and performance field by means of the proposal of another "regimen of truths". Such fact can be observed in the broadening of palliative care services and in the increase of publications on the subject. This study aims at learning the discourses on palliative care that the nurses have conveyed in the nursing publications. For such purpose we approached the Cultural Studies, especially those inspired on Michel Foucault in order to analyze articles published in two national nursing periodicals from 1999 to 2007. Among the statements, we point out those that see the hospital as a site where the patient is divested of his individuality and identity and those that mention such care as capable of providing the family and the patient with the best quality of life possible during the death process.

  9. Palliative Care as a Standard of Care in Pediatric Oncology.

    Science.gov (United States)

    Weaver, Meaghann S; Heinze, Katherine E; Kelly, Katherine P; Wiener, Lori; Casey, Robert L; Bell, Cynthia J; Wolfe, Joanne; Garee, Amy M; Watson, Anne; Hinds, Pamela S

    2015-12-01

    The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members.

  10. 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

  11. 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.

  12. 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

  13. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  14. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  15. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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: ...

  16. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  17. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  18. Palliative care registers: infringement on human rights?

    Science.gov (United States)

    Anthony-Pillai, Rosemarie

    2012-04-01

    A personal view made in light of the recent news article regarding a husband wanting to sue Addenbrooke's hospital over a Do Not Attempt Resuscitation decision. This article aims to highlight how the rolling out of cross boundary palliative care registers may be more at risk of infringing human rights.

  19. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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: ...

  20. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  1. 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

  2. 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

  3. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  4. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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 ...

  5. 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.

  6. 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

  7. Pediatric Palliative Care: A Personal Story

    Medline Plus

    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: ...

  8. 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...

  9. Palliative and hospice care in gynecologic cancer: a review.

    Science.gov (United States)

    Lopez-Acevedo, Micael; Lowery, William J; Lowery, Ashlei W; Lee, Paula S; Havrilesky, Laura J

    2013-10-01

    Despite the increasing availability of palliative care, oncology providers often misunderstand and underutilize these resources. The goals of palliative care are relief of suffering and provision of the best possible quality of life for both the patient and her family, regardless of where she is in the natural history of her disease. Lack of understanding and awareness of the services provided by palliative care physicians underlie barriers to referral. Oncologic providers spend a significant amount of time palliating the symptoms of cancer and its treatment; involvement of specialty palliative care providers can assist in managing the complex patient. Patients with gynecologic malignancies remain an ideal population for palliative care intervention. This review of the literature explores the current state of palliative care in the treatment of gynecologic cancers and its implications for the quality and cost of this treatment.

  10. 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

  11. 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.

  12. Palliative nursing care for children and adolescents with cancer

    Directory of Open Access Journals (Sweden)

    Gilmer MJ

    2012-06-01

    Full Text Available Terrah L Foster,1,2 Cynthia J Bell,1 Carey F McDonald,2 Joy S Harris,3 Mary Jo Gilmer,1,21Vanderbilt University School of Nursing, Nashville, 2Monroe Carell Jr Children's Hospital at Vanderbilt, Nashville, 3Vanderbilt University, Nashville, TN, USAAbstract: Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediatric oncology populations. This paper describes pediatric palliative care and provides an overview of literature related to the physical, psychological, social, and spiritual domains of palliative nursing care for children and adolescents with cancer. Nurses can provide optimal palliative care by accounting for children's understanding of death, encouraging early initiation of palliative care services, and improving utilization of pediatric palliative care in cancer settings. Specific roles of registered nurses and advanced practice nurses in pediatric palliative care will be addressed. Recommendations for future research are made to further advance the science of pediatric palliative care and decrease suffering for children and teens with cancer.Keywords: pediatric palliative care, pediatric cancer, oncology, child, suffering

  13. [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

  14. Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives

    OpenAIRE

    Shahid, Shaouli; Bessarab, Dawn; van Schaik, Katherine D; Aoun, Samar M.; Thompson, Sandra C

    2013-01-01

    Background: Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods: In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient a...

  15. [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

  16. Palliative care and neurology: time for a paradigm shift.

    Science.gov (United States)

    Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

    2014-08-01

    Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research.

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

    Science.gov (United States)

    Kar, S S; Subitha, L; Iswarya, S

    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 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.

  18. 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.

  19. 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.

  20. 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

  1. Palliative Care: Increasing the quality of life for patients and families… | NIH MedlinePlus the Magazine

    Science.gov (United States)

    ... this page please turn JavaScript on. Feature: Palliative Care Palliative Care: Increasing the quality of life for patients ... gov/conversationsmatter . Palliative Care Is Different from Hospice Care Palliative care is available to you at any time ...

  2. Relationship between three palliative care outcome scales

    Directory of Open Access Journals (Sweden)

    Donaldson Nora

    2004-11-01

    Full Text Available Abstract Background Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial structure of, three widely used scales among advanced cancer patients. Methods Patients were recruited who received home or hospital palliative care services in the south of England. Hope, quality of life and palliative outcomes were assessed by patients in face to face interviews, using three previously established scales – a generic measure (EQoL, a palliative care specific measure (POS and a measure of hope (Herth Hope Index. Analysis comprised: exploratory factor analysis of each individual scale, and all scales combined, and confirmatory factor analysis for model building and validation. Results Of 171 patients identified, 140 (81% consented and completed first interviews; mean age was 71 years, 54% were women, 132 had cancer. In exploratory analysis of individual means, three out of the five factors in the EQoL explained 75% of its variability, four out of the 10 factors in POS explained 63% of its variability, and in the Hope Index, nine out of the 12 items explained 69% of its variability. When exploring the relative factorial structure of all three scales, five factors explained 56% of total combined variability. Confirmatory analysis reduced this to a model with four factors – self-sufficiency, positivity, symptoms and spiritual. Removal of the spiritual factor left a model with an improved goodness of fit and a measure with 11 items. Conclusion We identified three factors which are important outcomes and would be simple to measure in clinical practice and research.

  3. Cooperating with a palliative home-care team

    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...... by 91 %, mainly due to improvement in symptom management, 'security', and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory....... Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance...

  4. Palliative care: a challenge for orthopaedic nursing care.

    Science.gov (United States)

    Watters, Carol L; Harvey, Carol V; Meehan, Anita J; Schoenly, Lorry

    2005-01-01

    Patients who face chronic, incurable, or life-ending musculoskeletal conditions often receive inadequate care either due to a lack of caregiver awareness or inattention to maintaining the highest quality at the end of life. Palliative care focuses on the comprehensive physical, psychological, social, spiritual, and existential needs of patients with life-threatening or debilitating illness. Orthopaedic nurses and all nurses in general are challenged to incorporate palliative care principles into care planned with patients and families facing end-of-life issues. This article addresses the leadership role the National Association of Orthopaedic Nurses (NAON) has taken to develop a consensus document which endorses the Last Acts Precepts of Palliative Care and affirms the need for palliative care with patients who experience life-threatening illness. A case study is used to illustrate the opportunity a multidisciplinary team has to center care on the individual, while remaining sensitive to the holistic needs of the patient for self-determination at the end of life.

  5. The Evidence Behind Integrating Palliative Care Into Oncology Practice.

    Science.gov (United States)

    Dailey, Erin

    2016-08-01

    Palliative care services provided alongside traditional oncology care have been shown to be beneficial to patients and families. This article provides a brief history of palliative care, a pathway to implementing these services into currently established oncology programs, and a brief discussion of common barriers.

  6. 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.

  7. 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.

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

    Science.gov (United States)

    ... this page please turn JavaScript on. Feature: Palliative Care Palliative Care Eases Symptoms, Enhances Lives Past Issues / Spring 2014 ... pharmacists, nutritionists, and others. When do I need palliative care? Many adults and children living with serious diseases ...

  9. Symptom management in palliative care and end of life care.

    Science.gov (United States)

    Bookbinder, Marilyn; McHugh, Marlene E

    2010-09-01

    There is a need for generalist- and specialist-level palliative care clinicians proficient in symptom management and care coordination. Major factors contributing to this need include changed disease processes and trajectories, improved medical techniques and diagnostic testing, successful screening for chronic conditions, and drugs that often prolong life. The rapid progressive illnesses and deaths that plagued the first half of the twentieth century have been replaced in the twenty-first century by increased survival rates. Conditions that require ongoing medical care beyond a year define the current chronic illness population. Long years of survival are often accompanied by a reduced quality of life that requires more medical and nursing care and longer home care. This article reviews the management of selected symptoms in palliative and end of life care.

  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. 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

  12. Attitudes of Nonpalliative Care Nurses towards Palliative Care

    Directory of Open Access Journals (Sweden)

    Victoria Tait

    2015-01-01

    Full Text Available The quality of palliative care given to terminally ill patients and their family members can be directly impacted by the attitudes that nurses hold towards palliative care. This study aimed to investigate the attitudes of nonpalliative care nurses towards death and dying in the context of palliative care. Nurses working within the medical aged care, cardiology and respiratory wards at two metropolitan teaching hospitals in Sydney completed the Frommelt Attitudes Towards Care of the Dying (FATCOD scale, an anonymous self-administered questionnaire, and a twelve-item demographic questionnaire. A total of 95 completed surveys were used in the final analysis. The total FATCOD score was 119.8±11.1, patient FATCOD was 79.6±8.6, and family FATCOD was 40.2±4.4. Of significance, the professional variables designation and role were associated with attitudes in the total FATCOD and country of birth, designation, highest level of education, and role were associated with attitudes towards the patient FATCOD. Scores for communication between the nurse and the terminally ill patient were poor. Health care facilities should focus on developing strategies to improve the communication skills among nonpalliative care nurses in order to optimize patient outcomes.

  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. Middle East experience in palliative care.

    Science.gov (United States)

    Zeinah, Ghaith F Abu; Al-Kindi, Sadeer G; Hassan, Azza Adel

    2013-02-01

    Palliative Care (PC) is still a relatively new concept in the Middle East (ME). It was first introduced in Saudi Arabia in 1992 and only recently in countries such as Qatar, Bahrain, and the UAE. Although the majority of Middle-Eastern countries, including Palestine, Iraq, Oman and Lebanon are in the capacity building phase, others such as Saudi and Jordan already have localized provision. In the absence of any of the ME countries approaching integration with the mainstream service providers, Saudi Arabia and Jordan are currently setting examples of achievement in the field. There are still countries with little or no known Palliative Care activity (Yemen and Syria). Political issues, scarcity of resources, and lack of education and awareness seem to be the common factors restricting the progress of this field in most countries. In order to improve the suboptimal PC services in the ME, emphasis should be directed toward providing formal education to professionals and raising awareness of the public. It is also necessary to put all differences aside and develop cross-border collaborations, whether through third party organizations such as the Middle East Cancer Consortium (MECC) or otherwise. This review compiles the available literature on the history and progress of the field of PC in most ME countries, while pointing out the major obstacles encountered by the active parties of each country.

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

    DEFF Research Database (Denmark)

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

    2002-01-01

    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......-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 symptomatology of participating patients and examines differences in symptomatology between patients in three palliative care functions: inpatient, outpatient, and palliative home care. RESULTS: Of 267 eligible patients who were referred to a department of palliative medicine, initial self...

  16. 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

  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.

  18. 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

  19. 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

  20. Mapping levels of palliative care development: a global update.

    Science.gov (United States)

    Lynch, Thomas; Connor, Stephen; Clark, David

    2013-06-01

    Our purpose is to categorize palliative care development, country by country, throughout the world, showing changes over time. We adopt a multi-method approach. Development is categorized using a six-part typology: Group 1 (no known hospice-palliative care activity) and Group 2 (capacity-building activity) are the same as developed during a previous study (2006), but Groups 3 and 4 have been subdivided to produce two additional levels of categorization: 3a) Isolated palliative care provision, 3b) Generalized palliative care provision, 4a) Countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision, and 4b) Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision. In 2011, 136 of the world's 234 countries (58%) had at least one palliative care service--an increase of 21 (+9%) from 2006, with the most significant gains having been made in Africa. Advanced integration of palliative care has been achieved in only 20 countries (8.5%). Total countries in each category are as follows: Group 1, 75 (32%); Group 2, 23 (10%); Group 3a, 74 (31.6%); Group 3b, 17 (7.3%); Group 4a, 25 (10.7%); and Group 4b, 20 (8.5%). Ratio of services to population among Group 4a/4b countries ranges from 1:34,000 (in Austria) to 1:8.5 million (in China); among Group 3a/3b countries, from 1:1000 (in Niue) to 1:90 million (in Pakistan). Although more than half of the world's countries have a palliative care service, many countries still have no provision, and major increases are needed before palliative care is generally accessible worldwide. PMID:23017628

  1. 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.

  2. Children's palliative care now! Highlights from the second ICPCN conference on children's palliative care, 18-21 May 2016, Buenos Aires, Argentina.

    Science.gov (United States)

    Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J

    2016-01-01

    The International Children's Palliative Care Network held its second international conference on children's palliative care in Buenos Aires, Argentina, from the 18th-21st May 2016. The theme of the conference was 'Children's Palliative Care…. Now!' emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children's palliative care, and hidden aspects of children's palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children's palliative care, genetics, perinatal and neonatal palliative care, the impact of children's palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children's palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The 'Big Debate' explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children's palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193

  3. 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

  4. 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

  5. [Ethical challenge in palliative support of intensive care patients].

    Science.gov (United States)

    Salomon, Fred

    2015-01-01

    Intensive care medicine and palliative care medicine were considered for a long time to be contrasting concepts in therapy. While intensive care medicine is directed towards prolonging life and tries to stabilize disordered body functions, palliative care medicine is focused upon the relief of disturbances to help patients in the face of death. Today both views have become congruent. Palliative aspects are equally important in curative therapy. In the course of illness or in respect of the patient's will, the aim of therapy may change from curative to palliative. Two examples are presented to illustrate the ethical challenges in this process. They follow from the medical indication, attention to the patient's will, different opinions in the team, truth at the bedside and from what must be done in the process of withdrawing therapy.

  6. [Pressure ulcers in palliative home care patients: prevalence and characteristics].

    Science.gov (United States)

    Queiroz, Ana Carolina de Castro Mendonça; Mota, Dálete Delalibera Corrêa de Faria; Bachion, Maria Marcia; Ferreira, Ana Cássia Mendes

    2014-04-01

    Persons in palliative care develop pressure ulcers (PU) as death approaches, but the extent of the problem is still unknown. The objectives were to identify the prevalence of pressure ulcers in people with cancer in palliative home care, compare the socio-demographic and clinical profile of patients with and without pressure ulcers, and analyze the characteristics of the ulcers. This descriptive, cross-sectional study included 64 people with advanced cancer in palliative home care. Twelve of them (18.8%) had PU, of whom 75.0% were men. The participants had one to three PU, amounting to 19 lesions, 89.4% of those developed at home and 47.4% at stage 3. The presence of PU was higher among those who had a history of previous wound. PU consisted of a significant event occurring in the studied population, indicating that preventive measures should be included in the home palliative care health team.

  7. Early Palliative Care Improves Patients' Quality of Life

    Science.gov (United States)

    ... fullstory_160885.html Early Palliative Care Improves Patients' Quality of Life Also increases chances of having end-of-life ... incurable cancer helps patients cope and improves their quality of life, a new study shows. It also leads to ...

  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. Opportunities for Palliative Care in Public Health.

    Science.gov (United States)

    De Lima, Liliana; Pastrana, Tania

    2016-01-01

    In May 2014, the World Health Assembly, of the World Health Organization (WHO), unanimously adopted a palliative care (PC) resolution, which outlines clear recommendations to the United Nations member states, such as including PC in national health policies and in the undergraduate curricula for health care professionals, and highlights the critical need for countries to ensure that there is an adequate supply of essential PC medicines, especially those needed to alleviate pain. This resolution also carries great challenges: Every year over 20 million patients (of which 6% are children) need PC at the end of life (EOL). However, in 2011, approximately three million patients received PC, and only one in ten people in need is currently receiving it. We describe this public health situation and systems failure, the history and evolution of PC, and the components of the WHO public health model. We propose a role for public health for PC integration in community settings to advance PC and relieve suffering in the world.

  10. 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.

  11. 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...

  12. 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

  13. 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 ...

  14. [Palliative Care Network - 20 years of experiences from Ticino / Southern Switzerland].

    Science.gov (United States)

    Neuenschwander, Hans; Gamondi, Claudia

    2012-02-01

    The PC program of the Italian speaking part of Switzerland (Ticino) has been developed bottom up since 1990. It was started with a palliative homecare service, called Hospice Ticino. Six years later PC consultant teams were introduced in the public hospitals. Finally in 2003 an acute palliative care unit was opened. Few resources are still lacking to ensure a comprehensive network, especially in the private clinics and in the elderly homes. Through the newly implemented National Strategy in PC 2010 - 12, the government of Canton Ticino has been charged with promoting a comprehensive, strategic and operative program in PC in order to guarantee access to high quality PC to every patient wherever he choses to be cared for. The article describes the history of Ticino's palliative care program, highlighting some of its controversial issues.

  15. 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

  16. Reflections on Palliative Care from the Jewish and Islamic Tradition

    Directory of Open Access Journals (Sweden)

    Michael Schultz

    2012-01-01

    Full Text Available Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.

  17. 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

  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. 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

  20. 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.

  1. 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....

  2. Care or custody? An evaluation of palliative care in prisons in North West England.

    Science.gov (United States)

    Turner, Mary; Payne, Sheila; Barbarachild, Zephyrine

    2011-06-01

    This study aimed to evaluate health professionals' views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice.

  3. 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

  4. Palliative care and dementia--A time and place?

    Science.gov (United States)

    Kydd, Angela; Sharp, Barbara

    2016-02-01

    The current focus in dementia care places emphasis on the potential of people to live well with the condition. Given the historical tendency to neglect the full rights and citizenship of people with dementia, such an emphasis gives hope and optimism that there is life after diagnosis. This paper seeks to explore the potential compromise of effective preparation for the complexities of advanced illness that may be presented by this consistently up-beat message. Dementia is a life limiting condition, currently without cure. Therefore, the appropriateness of palliative care may seem obvious. Yet, until relatively recently, palliative care was seen as an adjunct to oncology in the minds of professionals and public alike. However, there is a growing recognition that specialist palliative care has much to offer people with a range of long term conditions, including people with dementia. So, whilst 'living well' is an important message-especially following diagnosis-planning for advanced dementia and dying well is equally important. The aim of this paper is to highlight policy on the living well and the palliative care approach for people with dementia. A word limited narrative literature review was conducted to explore how policies have or have not informed the literature on both messages. The findings emphasise the need for a continuum approach to dementia care, with discussion on when, where, and how can palliative care be delivered for people with dementia. PMID:26586105

  5. Palliative care and dementia--A time and place?

    Science.gov (United States)

    Kydd, Angela; Sharp, Barbara

    2016-02-01

    The current focus in dementia care places emphasis on the potential of people to live well with the condition. Given the historical tendency to neglect the full rights and citizenship of people with dementia, such an emphasis gives hope and optimism that there is life after diagnosis. This paper seeks to explore the potential compromise of effective preparation for the complexities of advanced illness that may be presented by this consistently up-beat message. Dementia is a life limiting condition, currently without cure. Therefore, the appropriateness of palliative care may seem obvious. Yet, until relatively recently, palliative care was seen as an adjunct to oncology in the minds of professionals and public alike. However, there is a growing recognition that specialist palliative care has much to offer people with a range of long term conditions, including people with dementia. So, whilst 'living well' is an important message-especially following diagnosis-planning for advanced dementia and dying well is equally important. The aim of this paper is to highlight policy on the living well and the palliative care approach for people with dementia. A word limited narrative literature review was conducted to explore how policies have or have not informed the literature on both messages. The findings emphasise the need for a continuum approach to dementia care, with discussion on when, where, and how can palliative care be delivered for people with dementia.

  6. Integrating Pediatric Palliative Care into the School and Community.

    Science.gov (United States)

    Davis, Kathleen G

    2016-10-01

    Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with peers, including school, places of worship, sports, activities, and organizations. Partnerships between PPC professionals in health care settings and teachers, coaches, spiritual leaders, activity directors, and others, may lead to greater health and well-being. Children near the end of life or those with out-of-hospital do-not-resuscitate orders may also find palliation in their community. Cooperation between all caregivers benefit the child and family. PMID:27565367

  7. 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.

  8. 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

  9. 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...

  10. Family meetings in palliative care: Multidisciplinary clinical practice guidelines

    Directory of Open Access Journals (Sweden)

    O'Hanlon Brendan

    2008-08-01

    Full Text Available Abstract Background Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. Methods The guidelines were developed via the following methods: (1 A literature review; (2 Conceptual framework; (3 Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. Results The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. Conclusion Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.

  11. 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

  12. 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...

  13. A randomised, multicentre clinical trial of specialised palliative care plus standard treatment versus standard treatment alone for cancer patients with palliative care needs

    DEFF Research Database (Denmark)

    Johnsen, Anna Thit; Damkier, Anette; Vejlgaard, Tove Bahn;

    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'....

  14. [Current status of palliative care in medical oncology].

    Science.gov (United States)

    Sasaki, Tsubasa; Ohta, Syuji; Seki, Nobuhiko; Eguchi, Kenji

    2010-06-01

    A team approach is efficient in palliative care for cancer patients. People suffered from cancer have a right to receive high-quality palliative care earlier in cancer treatment. In Japan the National Act for Strategy against Cancer was enacted in 2007. Systematic educational programs supported by the Ministry of Health Labor and Welfare has been conducted for medical staffs, home care staffs, local pharmacists, care managers etc. at core institutes in each district. Pain control is still major target for cancer palliative medicine. Recently various types of opioids can be used routinely in daily clinical setting for Japanese cancer patients. Complementary and alternative medicine (CAM) may also effective in some patients but further study for proving scientific evidence in CAM should be warranted. Tailor-maid pain control will be established in the near future with molecular based pharmacogenomics.

  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.

  16. [Palliative care to adolescents with cancer: a literature review].

    Science.gov (United States)

    Remedi, Patrícia Pereira; Mello, Débora Faleiros de; Menossi, Maria José; Lima, Regina Aparecida Garcia de

    2009-01-01

    Providing care to adolescents with cancer in the process of death and dying has been a great challenge for health professionals. This challenge is marked by a high emotional burden and specificities of this stage of human development. The purpose of the present study was to review the scientific literature regarding palliative care to adolescents with cancer. This study is a literature review, which data collection was performed using Lilacs, Medline, and PsycInfo, in addition to non-systematic databases. An analysis of the manuscripts revealed three themes: adolescence and its different definitions; the particularities of adolescents with cancer; and palliative care to adolescents with cancer. The study showed there is a scarcity of evidenced-based research defining the panorama of symptoms affecting the quality of life during palliative care and an absence of specific programs in the stage of fast changes that, alone, demand for adaptive efforts.

  17. 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

  18. 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

  19. Collaborative care in NSCLC; the role of early palliative care

    Directory of Open Access Journals (Sweden)

    Marnie eHowe

    2014-07-01

    Full Text Available The management of non-small-cell-lung-cancer (NSCLC has evolved into a multidisciplinary team approach that traditionally has involved medical oncology, radiation oncology and thoracic surgery. However, in the era of personalized medicine the importance of molecular diagnostics requires adequate tissue for histologic subtyping and molecular testing and thus requires the engagement of other subspecialties such as pathology, respirology and interventional radiology. Unfortunately in 2014 the majority of patients presenting with NSCLC will succumb to their disease and the early integration of palliative care into the treatment strategy will improve the quality of life (QoL and end of life (EOL care of our patients and may in fact improve their overall survival.

  20. 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 ...

  1. 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

  2. Underutilization of palliative care services in the liver transplant population

    Science.gov (United States)

    Kathpalia, Priya; Smith, Alexander; Lai, Jennifer C

    2016-01-01

    AIM To evaluate use of palliative care services in patients with end-stage liver disease who do not have access to liver transplant. METHODS Evaluated were end-stage liver disease patients who were removed from the liver transplant wait-list or died prior to transplant at a single transplant center over a 2-year period. Those who were removed due to noncompliance or ultimately transplanted elsewhere were excluded from this study. Patient characteristics associated with palliative care consultation were assessed using logistic regression analysis. RESULTS Six hundred and eighty-three patients were listed for liver transplant in 2013-2014 with 107 (16%) dying (n = 62) or removed for clinical decompensation prior to liver transplant (n = 45): Median age was 58 years, and the majority were male (66%), Caucasian (53%), had Child C cirrhosis (61%) or hepatocellular carcinoma (52%). The palliative care team was consulted in only 18 of the 107 patients (17%) who died or were removed, 89% of which occurred as inpatients. Half of these consultations occurred within 72 h of death. In univariable analysis, patients of younger age, white race, and higher end-stage liver disease scores at time of listing and delisting were more likely to receive palliative care services. Only younger age [Odds ratio (OR) = 0.92; P = 0.02] and Caucasian race (OR = 4.90; P = 0.02) were still associated with integration of palliative care services through multivariable analysis. CONCLUSION Palliative care services are grossly underutilized in older, non-white patients with cirrhosis on the liver transplant wait-list. We encourage early integration of these services into clinical decision-making in the transplant population, with further studies aimed at understanding barriers to consultation. PMID:27683638

  3. 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

  4. 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

  5. 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.

  6. 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

  7. 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

  8. 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.

  9. What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient's Expectations and Needs when Being Admitted to a Palliative Care Unit.

    Directory of Open Access Journals (Sweden)

    Eva K Masel

    Full Text Available The aims of the study were to examine a patients' knowledge of palliative care, b patients' expectations and needs when being admitted to a palliative care unit, and c patient's concept of a good palliative care physician.The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques.The results revealed four themes: (1 information about palliative care, (2 supportive care needs, (3 being treated in a palliative care unit, and (4 qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient's language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment.The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient's needs will enable medical teams to improve professional and individualized care.

  10. 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

  11. 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.

  12. 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...

  13. 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.

  14. 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.

  15. 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

  16. Excellence in cost-effective inpatient specialist palliative care in the NHS - a new model.

    Science.gov (United States)

    Grogan, Eleanor; Paes, Paul; Peel, Tim

    2016-02-01

    There is little in the literature describing hospital specialist palliative care units (PCUs) within the NHS. This paper describes how specialist PCUs can be set up within and be entirely funded by the NHS, and outlines some of the challenges and successes of the units. Having PCUs within hospitals has offered patients increased choice over their place of care and death; perhaps not surprisingly leading to a reduced death rate in the acute hospital. However, since the opening of the PCUs there has also been an increased home death rate. The PCUs are well received by patients, families and other staff within the hospital. We believe they offer a model for excellence in cost-effective inpatient specialist palliative care within the NHS.

  17. Communication as a core skill of palliative surgical care.

    Science.gov (United States)

    Miner, Thomas J

    2012-03-01

    Excellence as a surgeon requires not only the technical and intellectual ability to effectively take care of surgical disease but also an ability to respond to the needs and questions of patients. This article provides an overview of the importance of communication skills in optimal surgical palliation and offers suggestions for a multidisciplinary team approach, using the palliative triangle as the ideal model of communication and interpersonal skills. This article also discusses guidelines for advanced surgical decision making and outlines methods to improve communication skills.

  18. Inoperable esophageal cancer and outcome of palliative care

    Institute of Scientific and Technical Information of China (English)

    Sima Besharat; Ali Jabbari; Shahryar Semnani; Abbasali Keshtkar; Jeran Marjani

    2008-01-01

    AIM: To determine the outcome of esophageal cancer patients referred for palliative care, in Gorgan and Gonbad gastrointestinal clinics, northeast of Iran.METHODS: This cross-sectional study was done on inoperable esophageal cancer cases referred to gastrointestinal clinics in Gorgan and Gonbad city (2005-2006). Demographic data were collected during the procedure and cases were followed up every one month. Improvement proportion was calculated with 95% confidence interval, to determine the rate of improvement. Survival analysis and Kaplan-Meier methods were used to estimate the duration of palliative care effectiveness.RESULTS: We recruited 39 cases into the study. Squamous cell carcinoma was the most prevalent (92.3%). The middle third of the esophagus was involved predominantly (51.3%). Dilation was the most preferred method (89.7%) and stenting was done in 4 cases. Decreasing dysphagia score was not related to palliation method or pathology type of carcinoma. Age of the patients was significantly related to the improvement of dysphagia score. Mean survival time was 137.6d and median was 103d.CONCLUSION: Results of this study showed a low survival rate after palliative care in esophageal cancer cases despite dysphagia scores' improvement after dilating or stenting.

  19. The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia

    Science.gov (United States)

    McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin

    2011-01-01

    Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…

  20. Team-based education in a palliative approach for rural nurses and unlicensed care providers.

    Science.gov (United States)

    Potter, Gail; Pesut, Barbara; Hooper, Brenda Pherne; Erbacker, Lynnelle

    2015-06-01

    This article describes the preparation and delivery of an educational intervention designed to improve rural nurses and unlicensed care providers' confidence in a palliative approach to care. A palliative approach takes the principles of supportive palliative care and adapts them for application earlier in nonspecialized palliative contexts for individuals living with life-limiting chronic illness. Curriculum in a palliative approach was constructed for nurses and unlicensed care providers (care aides and home health workers) and was delivered through a workshop and monthly follow-up sessions offered through distance technology. Participants valued the joint interactive education and came away with greater appreciation for one another's contributions to care. Insights were gained into common challenges when attempting to apply a palliative approach in rural areas. Important lessons were learned about educating nurses and unlicensed care providers together, about the use of technology for this group, and about teaching the concept of a palliative approach.

  1. Whose Business is Dying? Death, the Home and Palliative Care

    Directory of Open Access Journals (Sweden)

    John Rosenberg

    2011-03-01

    Full Text Available The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.

  2. Whose business is dying? : death, the home and palliative care

    Directory of Open Access Journals (Sweden)

    Rosenberg, John

    2011-01-01

    Full Text Available The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.

  3. 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...

  4. 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...

  5. 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

  6. 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

  7. 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/ ...

  8. Help is just a phone call away: after-hours support for palliative care patients wishing to die at home.

    Science.gov (United States)

    Baird-Bower, Debbie; Roach, Julie; Andrews, Morven; Onslow, Fiona; Curnin, Emma

    2016-06-01

    The 24-hour support for palliative patients is the gold standard of health care in Australia. However, in the state of Tasmania after-hours telephone support was spatially fragmented and inequitable. In 2014, hospice@HOME, a pilot programme introduced in Tasmania in that year, implemented a state-wide after-hours palliative care support service--1800HOSPICE--offering 24-hour support, 7 days a week for palliative patients, caregivers and the public. Six months of after-hours call logs in combination with additional patient data, were analysed to evaluate the use and wider implications of a state-wide after-hours palliative care support number. Family and caregivers mainly used the after-hours support to request changes to support services (25.1%), report changes in patients' overall condition (23.6%) and request acute medical assistance (16.2%). Through the use of the after-hours services by all individuals involved in the care, end-of-life patients were able to reduce ambulance contact and emergency department admission, and thereby increase their likelihood of dying at home (for patients whose preference was to die at home). Overall, 24-hour palliative care telephone support was found to be a valuable tool for all individuals involved in the care of end-of-life patients.

  9. 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.

  10. 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.

  11. 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.

  12. Educating surgeons for the new golden hours: honing the skills of palliative care.

    Science.gov (United States)

    Huffman, Joan L

    2005-04-01

    All surgeons should maintain a lifetime commitment to education and learning. Those who already are in practice need to make the effort to obtain or refresh their education in basic competencies in palliative care and to provide a measured balance between philosophy and practical skills. Many resources and teaching tools are available to assist in this continuing process: surgical peers (and peers from other medical specialties),journals, textbooks, CME conferences, surgical governance and educational organizations, and palliative care websites. A tremendous summary article on palliative care education for surgeons was published recently in JACS[24]. Surgeons must be competent in the following palliative care skills:communication, holistic patient evaluation, control of pain and symptoms,understanding legal/ethical issues, withdrawing care, and the continuum of acute to chronic to terminal care. If they cannot attend to all of these areas individually, they need to be aware of the local, regional, and national resources that are available to assist the patient (or their surrogate decision maker) and themselves in the end-of-life arena. Consultations and referrals should be accomplished in such a manner that the patient does not feel abandoned by his/her surgeon at such a critical point in his/her life. Practicing surgeons also must be involved actively in the education of resident and medical students in didactic and clinical situations. Most importantly, they must model the appropriate behaviors for their charges personally, whether it be in the consultation room breaking bad news compassionately or at the bedside easing the path to the next world. In these golden hours, the educated surgeon who wields new and mighty resources can be the greatest champion of the patient who is at the end of life.

  13. 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

  14. Attachment theory and spirituality: two threads converging in palliative care?

    Science.gov (United States)

    Loetz, Cécile; Müller, Jakob; Frick, Eckhard; Petersen, Yvonne; Hvidt, Niels Christian; Mauer, Christine

    2013-01-01

    The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.

  15. Attachment Theory and Spirituality: Two Threads Converging in Palliative Care?

    Directory of Open Access Journals (Sweden)

    Cécile Loetz

    2013-01-01

    Full Text Available The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient’s needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person’s attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one’s own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.

  16. 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.

  17. 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.

  18. 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.

  19. 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

  20. 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...

  1. 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

  2. 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.

  3. 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,...

  4. Palliative care curriculum for speech-language pathology students.

    Science.gov (United States)

    Mathisen, Bernice; Yates, Patsy; Crofts, Penny

    2011-01-01

    This paper reports on the experience of undergraduate speech-language pathology students at one university chosen for the implementation stage of the Palliative Care Curriculum for Undergraduates (PCC4U) Project. Funded by a government department for health and ageing through a national palliative care programme, the project was managed by a team of researchers from the discipline of nursing. The PCC4U project championed the inclusion of palliative care education as an integral part of medical, nursing, and allied healthcare undergraduate training. Of the pilot sites chosen for the PCC4U project, only one site, reported here, included both speech-language pathology and social work disciplines, providing an important opportunity for interdisciplinary collaboration on novel curriculum development in an area of mutual interest. This synergy served as an excellent foundation for ongoing opportunities for interdisciplinary teaching and learning in the university. Speech-language pathology students reported that the project was an invaluable addition to their education and preparation for clinical practice.

  5. Integration of early specialist palliative care in cancer care and patient related outcomes: A critical review of evidence

    Directory of Open Access Journals (Sweden)

    Naveen Salins

    2016-01-01

    Conclusions: In adult oncology, there is evidence to suggest early specialist palliative care improves HRQOL, mood, treatment decision-making, health care utilization, advanced care planning, patient satisfaction, and end-of-life care. There is moderate evidence to support the role of early specialist palliative care intervention in improvement of symptoms, survival, and health-related communication. There is limited evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies on barriers and negative patient outcomes may provide useful insights toward restructuring early specialist palliative care interventions.

  6. 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.

  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 ... we use - Duration: 4:48. Social Care Institute for Excellence 21,098 views 4: ...

  9. Integration of Early Specialist Palliative Care in Cancer Care and Patient Related Outcomes: A Critical Review of Evidence

    Science.gov (United States)

    Salins, Naveen; Ramanjulu, Raghavendra; Patra, Lipika; Deodhar, Jayita; Muckaden, Mary Ann

    2016-01-01

    Introduction: World Health Organization and American Society of Clinical Oncology recommend early integration of specialist palliative care in patients with cancer. This paper focuses on critical review of evidence on integration of early specialist palliative care in cancer care and patient-related outcomes. Methods: The question for the literature search was – Does integration of early specialist palliative care in cancer care influences patient-related outcomes? 31 articles related to literature search review question were included in this paper. Results: Ten patient-related outcomes of early specialist palliative care in adult cancer care was studied. Studies by Temel et al. (2012), Bakitas et al. (2009), Zimmermann et al. (2014), Rugno et al. (2014), Lowery et al. (2013) and Walker et al. (2014) showed early specialist palliative care improves health-related quality of life (HRQOL). Studies by Pirl et al. (2012), Lowery et al. (2013), and Walker et al. (2014) showed early specialist palliative care improved mood depression and anxiety. Studies by Zimmermann et al. and Rugno et al. (2014) showed symptom control benefit of early specialist palliative care. Studies by Temel (2010), Bakitas (2015) and Rugno et al. (2014) showed survival improvement with early specialist palliative care. All these studies were carried in ambulatory palliative care setting. No survival benefit of palliative care intervention was seen in inpatient palliative care setting. The studies by Geer et al. (2012), Rugno et al. (2014), and Lowery et al. (2013) showed that early palliative care intervention positively influences treatment decision making. All the studies showed that palliative care intervention group received less intravenous chemotherapy in last few weeks of life. Studies by Yoong et al. and Temel et al. (2011) shows early specialist palliative care improves advanced care planning. Studies by Temel et al. (2010), Greer et al. (2012), McNamara et al. (2013), Hui et al. (2014

  10. Palliative care physicians′ religious / world view and attitude towards euthanasia: A quantitative study among flemish palliative care physicians

    Directory of Open Access Journals (Sweden)

    B Broeckaert

    2009-01-01

    Full Text Available Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147 working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation,religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. Results: We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. Conclusions: In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia.

  11. 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.

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

    DEFF Research Database (Denmark)

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

    2015-01-01

    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 dying...

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

    Directory of Open Access Journals (Sweden)

    Bethel Ann Powers

    2011-01-01

    Full Text Available Objective. To illustrate distinctions and intersections of palliative care (PC and end-of-life (EOL services through examples from case-centered data of older adults cared for during a four-year ethnographic study of an acute care hospital palliative care consultation service. Methods. Qualitative narrative and thematic analysis. Results. Description of four practice paradigms (EOL transitions, prognostic uncertainty, discharge planning, and patient/family values and preferences and identification of the underlying structure and communication patterns of PC consultation services common to them. Conclusions. Consistent with reports by other researchers, study data support the need to move beyond equating PC with hospice or EOL care and the notion that EOL is a well-demarcated period of time before death. If professional health care providers assume that PC services are limited to assisting with and helping patients and families prepare for dying, they miss opportunities to provide care considered important to older individuals confronting life-limiting illnesses.

  14. 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...

  15. 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...

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

    OpenAIRE

    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...

  17. Changes in symptoms and pain intensity of cancer patients after enrollment in palliative care at home

    OpenAIRE

    Dumitrescu, Luminita; van den Heuvel-Olaroiu, Marinela; van den Heuvel, Wim J. A.

    2007-01-01

    This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical characteristics were related to these changes. The analysis is based on 102 cancer patients. Data were collected through systematic registration during the palliative care process. At enrollment, patien...

  18. 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...

  19. 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.

  20. 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.

  1. 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.

  2. 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;

    sectors.METHOD. A number of focus group interviews were conducted with three types of subgroups: 1) Bereaved relatives, 2) GPs and 3) Various health-care-professionals, namely community nurses, hospital physicians and GPs. The interviews were transcribed and analysed according to a phenomenological......BACKGROUND. Palliative care for cancer patients is an important part of a GP's work. Although every GP is frequently involved in care for terminally ill cancer patients, only little is known about how these palliative efforts are perceived by the patients and their families, a knowledge...... approach.RESULTS. The analyses revealed several key areas, e.g.: 1) How to take, give and maintain professional responsibility for palliative home care. 2) A need for transparent communication both among primary care professionals and among professionals across the primary/secondary interface. 3...

  3. Developing cultural competence in palliative care.

    Science.gov (United States)

    McGee, Paula; Johnson, Mark R D

    2014-02-01

    Increasing ethnic or cultural diversity in the population served by health-care services requires improved competence and updated provision. Both individual staff and institutions need to reflect on and prepare to meet new challenges. Three key elements-reflective self-awareness, knowledge of others, and skills in managing difference-must be developed. Recognition of diversity and a database of appropriate information are essential for both workers and management of organisations. Above all, some preparedness for continual change and learning is essential. This article provides some suggestions and examples to assist with this.

  4. Organizing palliative care for rural populations: a systematic review of the evidence.

    NARCIS (Netherlands)

    Evans, R.W.; Stone, D.; Elwyn, G.

    2003-01-01

    BACKGROUND: Palliative care services have developed mostly in urban areas. Rural areas typically are characterized by the lack of well-organized services, with primary care professionals, specifically GPs and community nurses, having to undertake most of the palliative care. Little is known, however

  5. [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

  6. 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

  7. 77 FR 76053 - Proposed Collection; Comment Request; Pediatric Palliative Care Campaign Pilot Survey

    Science.gov (United States)

    2012-12-26

    ... Care Campaign Pilot Survey Summary: In compliance with the requirement of Section 3506(c)(2)(A) of the.... Proposed Collection: Pediatric Palliative Care Campaign Pilot Survey-0925-New-National Institute of Nursing... conditions. The Pediatric Palliative Care Campaign Pilot Survey will assess the information and...

  8. Integration of palliative care in the context of rapid response: a report from the Improving Palliative Care in the ICU advisory board.

    Science.gov (United States)

    Nelson, Judith E; Mathews, Kusum S; Weissman, David E; Brasel, Karen J; Campbell, Margaret; Curtis, J Randall; Frontera, Jennifer A; Gabriel, Michelle; Hays, Ross M; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Weiss, Stefanie P; Bassett, Rick; Boss, Renee D; Lustbader, Dana R

    2015-02-01

    Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved.

  9. 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. PMID:27563348

  10. 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.

  11. 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

  12. 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

  13. 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...

  14. 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

  15. Medication use during end-of-life care in a palliative care centre

    NARCIS (Netherlands)

    A.D. Masman (Anniek); M. van Dijk (Monique); D. Tibboel (Dick); F.P.M. Baar (Frans); R.A. Mathot (Ron)

    2015-01-01

    textabstractBackground In end-of-life care, symptoms of discomfort are mainly managed by drug therapy, the guidelines for which are mainly based on expert opinions. A few papers have inventoried drug prescriptions in palliative care settings, but none has reported the frequency of use in combination

  16. Palliative care providers' perspectives on service and education needs.

    Science.gov (United States)

    Sellick, S M; Charles, K; Dagsvik, J; Kelley, M L

    1996-01-01

    To obtain the information necessary for coordinated regional program development, we examined (a) the multidisciplinary viewpoint of palliative care service provision and (b) the continuing education needs reported by non-physician service providers. Of 146 surveys distributed to care providers from multiple settings, 135 were returned. Respondents cited these problems: fragmented services, poor pain and symptom control, lack of education for providers, lack of public awareness, problems with the continuity and coordination of care, lack of respite, and lack of hospice beds. Stress management for caregivers, pain management, communication skills, and symptom assessment were rated as priorities in continuing education. Lectures, small group discussions, practicum, and regular medical centre rounds were the preferred learning formats, while costs and staff shortages were cited as educational barriers.

  17. Palliative cancer care ethics: Principles and challenges in the Indian setting

    Directory of Open Access Journals (Sweden)

    Tejaswi Mudigonda

    2010-01-01

    Full Text Available Palliative cancer treatment is a system of care that seeks to relieve suffering in patients with progressive cancer. Given the intractable symptoms with which certain malignancies manifest, palliative care offers a practical approach towards improving the patient′s quality of life. However, there are an array of ethical issues associated with this treatment strategy such as particular methods of pain relief, a reliable assessment of suffering, autonomy, and multi-specialist care. While these principles are important to increase and improve the network of palliative care, the resource-poor Indian environments present numerous barriers for these principles to be practically applied. As the infrastructure of comprehensive cancer centers develop, paralleled with an increase in training of palliative care professionals, significant improvements need to be made in order to elevate the status of palliative cancer care in India.

  18. 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...

  19. Sexuality and Life-Threatening Illness: Implications for Social Work and Palliative Care

    Science.gov (United States)

    Cagle, John G.; Bolte, Sage

    2009-01-01

    Social workers in hospice and palliative care settings have been charged with the responsibility of addressing sexuality with their patients and families. However, little direction has been offered as to how to approach this difficult subject within the context of palliative care. This article provides a critical analysis of the previous…

  20. Changes in symptoms and pain intensity of cancer patients after enrollment in palliative care at home

    NARCIS (Netherlands)

    Dumitrescu, Luminita; van den Heuvel-Olaroiu, Marinela; van den Heuvel, Wim J. A.

    2007-01-01

    This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical chara

  1. 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

  2. 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

  3. 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

  4. How do GPs recognize needs for palliative care in their patients?

    NARCIS (Netherlands)

    Claessen, S.J.; Francke, A.L.; Deliens, L.

    2012-01-01

    Aim: The aim of this study was to explore how GPs in the Netherlands recognize patients’ needs for palliative care. Methods: We conducted qualitative semi-structured interviews with about 25 GPs. These GPs were interviewed about recognition of the needs for palliative care in their patients and how

  5. Pediatric palliative care and pediatric medical ethics: opportunities and challenges.

    Science.gov (United States)

    Feudtner, Chris; Nathanson, Pamela G

    2014-02-01

    The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong communication skills of both sets of providers, as well as the potential for resource sharing and research collaboration. At the same time, the personal and professional relationships between PPC and PME present challenges, including potential conflict with colleagues, perceived or actual bias toward a palliative care perspective in resolving ethical problems, potential delay or underuse of PME services, and a potential undervaluing of the medical expertise required for PPC consultation. We recommend that these challenges be managed by: (1) clearly defining and communicating clinical roles of PPC and PME staff, (2) developing questions that may prompt PPC and PME teams to request consultation from the other service, (3) developing explicit recusal criteria for PPC providers who also provide PME consultation, (4) ensuring that PPC and PME services remain organizationally distinct, and (5) developing well-defined and broad scopes of practice. Overall, the rich relationship between PPC and PME offers substantial opportunities to better serve patients and families facing difficult decisions.

  6. 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

  7. 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 ...

  8. 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. |

  9. 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

  10. 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....

  11. 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.

  12. 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 ...

  13. 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

  14. A Parent's Journey: Incorporating Principles of Palliative Care into Practice for Children with Chronic Neurologic Diseases.

    Science.gov (United States)

    Brown, Allyson; Clark, Jonna D

    2015-09-01

    Rather than in conflict or in competition with the curative model of care, pediatric palliative care is a complementary and transdisciplinary approach used to optimize medical care for children with complex medical conditions. It provides care to the whole child, including physical, mental, and spiritual dimensions, in addition to support for the family. Through the voice of a parent, the following case-based discussion demonstrates how the fundamentals of palliative care medicine, when instituted early in the course of disease, can assist parents and families with shared medical decision making, ultimately improving the quality of life for children with life-limiting illnesses. Pediatric neurologists, as subspecialists who provide medical care for children with chronic and complex conditions, should consider invoking the principles of palliative care early in the course of a disease process, either through applying general facets or, if available, through consultation with a specialty palliative care service. PMID:26358425

  15. 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...

  16. 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.

  17. 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

  18. 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

  19. [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

  20. 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

  1. [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

  2. 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.

  3. Patient autonomy problems in palliative care: systematic development and evaluation of a questionnaire.

    NARCIS (Netherlands)

    Vernooy-Dassen, M.J.F.J.; Osse, B.H.P.; Schade, E.; Grol, R.P.T.M.

    2005-01-01

    No instrument to assess autonomy problems in palliative care is currently available. The purpose of this study was to develop a comprehensive and concise questionnaire to measure autonomy problems in palliative cancer patients and to study its validity and reliability. We systematically developed a

  4. 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.

  5. Oncologists’ Perspectives on Concurrent Palliative Care in an NCI-designated Comprehensive Cancer Center

    Science.gov (United States)

    Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim

    2013-01-01

    Purpose To understand oncology clinicians’ perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. Methods Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Results Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) “some patients just want to fight”, and 4) helping with transitions; timing is everything. Five themes comprised oncologists’ views on the complementary role of palliative care: 1) “refer early and often”, 2) referral challenges: “Palliative” equals hospice; “Heme patients are different”, 3) palliative care as consultants or co-managers, 4) palliative care “shares the load”, and 5) ENABLE II facilitated palliative care integration. Conclusions Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care. PMID:23040412

  6. Using routine data to improve palliative and end of life care.

    Science.gov (United States)

    Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia

    2016-09-01

    Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.

  7. [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

  8. "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

  9. 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...

  10. 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

  11. 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.

  12. 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...

  13. [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.

  14. 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.

  15. 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

  16. 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

  17. 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

  18. 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

  19. 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.

  20. 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

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

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn

    sectors. Methods. A series of focus group interviews is presently being conducted with participation of relatives of recently deceased cancer patients, GPs, community nurses and hospital physicians working with palliative patients. The interviews are transcribed and analysed  according...... involved in care for terminally ill cancer patients, only little is known about how the palliation efforts are perceived, a knowledge that is vital to make improvements. We aimed to analyse the quality of palliative home care based on evaluations by the relatives and the primary and secondary health care...... to the phenomenological approach.The interviews will form the basis of a survey of 500 episodes of palliative home care as evaluated by relatives, GPs and district nurses.Results. These results are the preliminary results from the first interviews with GPs. Three themes emerged from the interviews: 1) The key persons...

  2. 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 palliative care. Methods: The physiotherapy, psychomotor-therapy and nursing programmes offer an interdisciplinary elective course in palliative care twice annually. The course consists of two weeks of theory followed by two weeks of clinical practice, and wraps up with two more weeks of theory. Throughout...... the course, the students work in interdisciplinary groups. The programme for the course has been developed on the basis of WHO’s definition of palliative care, with special emphasis on the interdisciplinary perspectives and activities in relation to the physical, psychological, social and spiritual areas...

  3. [The cultural history of palliative care in primitive societies: an integrative review].

    Science.gov (United States)

    Siles González, José; Solano Ruiz, Maria Del Carmen

    2012-08-01

    The objective of this study is to describe the evolution of palliative care in order to reflect on the possibility of its origin in primitive cultures and their relationship with the beginnings of the cult of the dead. It describes the change in the symbolic structures and social interactions involved in palliative care during prehistory: functional unit, functional framework and functional element. The theoretical framework is based on cultural history, the dialectical structural model and symbolic interactionism. Categorization techniques, cultural history and dialectic structuralism analyses were performed. Palliative care existed in primitive societies, mostly associated with the rites of passage with a high symbolic content. The social structures - functional unit, functional framework and functional element - are the pillars that supported palliative care in prehistory societies.

  4. 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.

  5. 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

  6. 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.

  7. 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

  8. 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...

  9. 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.

  10. 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...

  11. The role of religious, social and political groups in palliative care in Northern Kerala

    Directory of Open Access Journals (Sweden)

    Sallnow Libby

    2005-01-01

    Full Text Available The local community has played an important and central role in the development and determination of palliative care services in Northern Kerala. This article looks at the history of the collaboration and how palliative care services have evolved over the past 4 years from 2001 to 2005. The contribution of groups such as nongovernmental organizations, charities and religious groups is outlined and benefits gained by each side discussed.

  12. 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...

  13. Palliative Care Improves Survival, Quality of Life in Advanced Lung Cancer | Division of Cancer Prevention

    Science.gov (United States)

    Results from the first randomized clinical trial of its kind have revealed a surprising and welcome benefit of early palliative care for patients with advanced lung cancer—longer median survival. Although several researchers said that the finding needs to be confirmed in other trials of patients with other cancer types, they were cautiously optimistic that the trial results could influence oncologists’ perceptions and use of palliative care. |

  14. 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. ...

  15. 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...

  16. Progress in palliative care in Israel: comparative mapping and next steps

    Directory of Open Access Journals (Sweden)

    Bentur Netta

    2012-02-01

    Full Text Available Abstract Palliative care was established rapidly in some countries, while in other countries its establishment has taken a different trajectory. This paper identifies core steps in developing a medical specialty and examines those taken by Israel as compared with the US and England for palliative care. It considers the next steps Israel may take. Palliative care aims to provide quality of life for those with serious illnesses by attending to the illness-prompted physical, mental, social, and spiritual needs of patients and their families. It has ancient roots in medicine; its modern iteration began against the backdrop of new cures and life-sustaining technology which challenged conceptions of how to respect the sanctity of life. The first modern hospice was created by Saunders; it provided proof that palliative care works, and this has occurred in Israel as well (the first step. Another key step is usually skills development among clinicians; in Israel, few education and training opportunities exist so far. Specialty recognition also has not yet occurred in Israel. Service development remains limited and a major shortage of services exists, compared to the US. Research capacity in Israel is also limited. Policy to develop and sustain palliative care in Israel is underway; in 2009, the Ministry of Health established policy for implementing palliative care. However, it still lacks a financially viable infrastructure. We conclude that palliative care in Israel is emerging but has far to go. Adequate resource allocation, educational guidelines, credentialed manpower and specialty leadership are the key factors that palliative care development in Israel needs.

  17. 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.

  18. [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

  19. 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

  20. 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.

  1. 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

  2. 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

  3. Predictors of home death among palliative cancer patients in a primary care setting

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn; Olesen, Frede; Vedsted, Peter;

      Background: In most western countries, the majority of palliative cancer patients wish to die at home, where GPs are often deeply involved. However, most research focuses on specialised palliative care, which results in a lack of reliable predictors of home death in primary care. Aim: To analyse...... predictors of home death among deceased palliative cancer patients in a primary care setting. Methods: Using Danish registers, we identified 787 deceased cancer patients and sent a questionnaire to their GPs. The questions concerned the GPs' involvement and the duration of the palliative period at home. We......-of-hours, and whether the GP had had contact with the relatives. Results: 350 questionnaires were filled out. In the preliminary analysis we found that even though many patients died in hospital, this group spent nearly as much of their last time at home as the patients who actually died at home. The analysis...

  4. 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

  5. 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.

  6. 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.

  7. The Role of Play in Children's Palliative Care.

    Science.gov (United States)

    Boucher, Sue; Downing, Julia; Shemilt, Rise

    2014-10-01

    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 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.

  8. 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.

  9. [Palliative Care for Rectal Cancer Complicated with Gastric Cancer].

    Science.gov (United States)

    Furukawa, Takeshi; Takahashi, Hitoshi; Tanaka, Kei; Muto, Takaaki

    2015-11-01

    Medical advancements have led to an increase in the number of elderly people. However, standard treatments may sometimes be difficult to use in elderly people. Here, we report the case of an elderly patient with rectal and gastric cancer who refused radical surgery. The patient was an 83-year-old man who had type-2 diabetes, hypertension, hyperuricemia, mitral valve regurgitation, and mild dementia. Furthermore, he was blind in both eyes owing to glaucoma. He first visited our hospital in 2005. In 2010, he was diagnosed with anemia, but he refused a thorough examination; however, he did consent to take iron supplements. In July 2011, he consulted our hospital for symptoms of frequent diarrhea, and agreed to an examination. After colonoscopy, he was diagnosed with rectal cancer that was becoming obstructive. There were no metastases to other organs, but he was also diagnosed with gastric cancer. As he and his family refused radical surgery, a stoma was constructed. After the operation, he received palliative care but died in September 2013. PMID:26805335

  10. 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.

  11. 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.

  12. 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

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

    Science.gov (United States)

    Davies, Nathan; Maio, Laura; van Riet Paap, Jasper; Mariani, Elena; Jaspers, Birgit; Sommerbakk, Ragni; Grammatico, Daniela; Manthorpe, Jill; Ahmedzai, Sam; Vernooij-Dassen, Myrra; Iliffe, Steve

    2013-01-01

    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 across five countries. Method One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. PMID:24131061

  14. 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.

  15. 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.

  16. Study protocol: optimization of complex palliative care at home via telemedicine. A cluster randomized controlled trial

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    Hasselaar Jeroen

    2011-08-01

    Full Text Available Abstract Background Due to the growing number of elderly with advanced chronic conditions, healthcare services will come under increasing pressure. Teleconsultation is an innovative approach to deliver quality of care for palliative patients at home. Quantitative studies assessing the effect of teleconsultation on clinical outcomes are scarce. The aim of this present study is to investigate the effectiveness of teleconsultation in complex palliative homecare. Methods/Design During a 2-year recruitment period, GPs are invited to participate in this cluster randomized controlled trial. When a GP refers an eligible patient for the study, the GP is randomized to the intervention group or the control group. Patients in the intervention group have a weekly teleconsultation with a nurse practitioner and/or a physician of the palliative consultation team. The nurse practitioner, in cooperation with the palliative care specialist of the palliative consultation team, advises the GP on treatment policy of the patient. The primary outcome of patient symptom burden is assessed at baseline and weekly using the Edmonton Symptom Assessment Scale (ESAS and at baseline and every four weeks using the Hospital Anxiety and Depression Scale (HADS. Secondary outcomes are self-perceived burden from informal care (EDIZ, patient experienced continuity of medical care (NCQ, patient and caregiver satisfaction with the teleconsultation (PSQ, the experienced problems and needs in palliative care (PNPC-sv and the number of hospital admissions. Discussion This is one of the first randomized controlled trials in palliative telecare. Our data will verify whether telemedicine positively affects palliative homecare. Trial registration The Netherlands National Trial Register NTR2817

  17. 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.

  18. [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.

  19. 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

  20. Family Caregivers’ Social Representations of Death in a Palliative Care Context

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    Sabrina Lessard

    2016-03-01

    Full Text Available The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a losses as different kinds of “deaths,” (b palliative care as a place to negotiate with death, and (c last times as confirmation of the end. These images highlight the meaning attributed to the body and the position of the dying person in our Western society. Representations of palliative care reveal a kind of paradox, a place of respect and of “gentle death,” and a place where death is almost too omnipresent. They also show the strong beliefs surrounding the use of painkillers at the end of life. Finally, these images refer to end-of-life personal rituals viewed as support for the passage into a new state of being. This study provides a better understanding of the common sense of death for family caregivers in a palliative care context and of the meanings of this emotional subject.

  1. 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

  2. Complementary medicine in palliative care and cancer symptom management.

    Science.gov (United States)

    Mansky, Patrick J; Wallerstedt, Dawn B

    2006-01-01

    Complementary and alternative medicine (CAM) use among cancer patients varies according to geographical area, gender, and disease diagnosis. The prevalence of CAM use among cancer patients in the United States has been estimated to be between 7% and 54%. Most cancer patients use CAM with the hope of boosting the immune system, relieving pain, and controlling side effects related to disease or treatment. Only a minority of patients include CAM in the treatment plan with curative intent. This review article focuses on practices belonging to the CAM domains of mind-body medicine, CAM botanicals, manipulative practices, and energy medicine, because they are widely used as complementary approaches to palliative cancer care and cancer symptom management. In the area of cancer symptom management, auricular acupuncture, therapeutic touch, and hypnosis may help to manage cancer pain. Music therapy, massage, and hypnosis may have an effect on anxiety, and both acupuncture and massage may have a therapeutic role in cancer fatigue. Acupuncture and selected botanicals may reduce chemotherapy-induced nausea and emesis, and hypnosis and guided imagery may be beneficial in anticipatory nausea and vomiting. Transcendental meditation and the mindfulness-based stress reduction can play a role in the management of depressed mood and anxiety. Black cohosh and phytoestrogen-rich foods may reduce vasomotor symptoms in postmenopausal women. Most CAM approaches to the treatment of cancer are safe when used by a CAM practitioner experienced in the treatment of cancer patients. The potential for many commonly used botanical to interact with prescription drugs continues to be a concern. Botanicals should be used with caution by cancer patients and only under the guidance of an oncologist knowledgeable in their use.

  3. 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.

  4. 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

  5. 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

  6. Development of a set of process and structure indicators for palliative care: the Europall project

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    Woitha Kathrin

    2012-11-01

    Full Text Available Abstract Background By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs, patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs.

  7. 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

  8. Strategic planning by the palliative care steering committee of the Middle East Cancer Consortium.

    Science.gov (United States)

    Moore, Shannon Y; Pirrello, Rosene D; Christianson, Sonya K; Ferris, Frank D

    2011-04-01

    High quality comprehensive palliative care is a critical need for millions of patients and families, but remains only a dream in many parts of the world. The failure to do a strategic planning process is one obstacle to advancing education and pain prevention and relief. The Middle Eastern Cancer Consortium Steering Committee attendees completed an initial strategic planning process and identified "developmental steps" to advance palliative care. Underscoring the multi-disciplinary nature of comprehensive palliative care, discipline-specific planning was done (adult and pediatric cancer and medicine, pharmacy, nursing) in a separate process from country-specific planning. Delineating the layers of intersection and differences between disciplines and countries was very powerful. Finding the common strengths and weaknesses in the status quo creates the potential for a more powerful regional response to the palliative care needs. Implementing and refining these preliminary strategic plans will augment and align the efforts to advance palliative care education and pain management in the Middle East. The dream to prevent and relieve suffering for millions of patients with advanced disease will become reality with a powerful strategic planning process well implemented.

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

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    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.

  10. Validation of a new instrument for self-assessment of nurses' core competencies in palliative care.

    Science.gov (United States)

    Slåtten, Kari; Hatlevik, Ove; Fagerström, Lisbeth

    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 colleges in Norway answered the questionnaire. The initial analysis, with structural equation modelling, was run in Mplus 7. A modified confirmatory factor analysis revealed the following five domains: knowledge in symptom management, systematic use of the Edmonton symptom assessment system, teamwork skills, interpersonal skills, and life closure skills. The actual instrument needs to be tested in a practice setting with a larger sample to confirm its usefulness. The instrument has the potential to be used to refine clinical competence in palliative care and be used for the training and evaluation of palliative care nurses.

  11. 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.

  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. [Palliative care birth plan: a field of perinatal medicine to build].

    Science.gov (United States)

    Tosello, B; Le Coz, P; Payot, A; Gire, C; Einaudi, M-A

    2013-04-01

    Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan.

  14. 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.

  15. [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

  16. [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

  17. 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

  18. 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

  19. Overcoming the Obstacles in Promoting Hospice Palliative Care--Sharing Experiences of the Taiwan Changhua Christian Hospital.

    Science.gov (United States)

    Tsai, Pei-Yu

    2015-01-01

    Hospice palliative care for terminal patients is necessary, yet challenges are on the way worldwide. This study demonstrated that hospice palliative care has been quickly developed in Taiwan due to the support of the National Health Insurance system, the promotion by civil societies and religious groups, patient's legal right for DNR, easier access to pain killers through medical prescription, and well-planned hospice staff training programs. This paper introduces how hospice consultation is provided by a comprehensive hospice palliative team at Changhua Christian Hospital to establish trust and cooperation with the medical team, and to improve hospice-palliative care referral and utilization rates.

  20. 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...

  1. 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.

  2. The denial of death thesis: sociological critique and implications for palliative care.

    Science.gov (United States)

    Zimmermann, Camilla; Rodin, Gary

    2004-03-01

    It has become commonplace to say that contemporary western society is 'death-denying'. This characterization, which sociologists have termed the 'denial of death thesis', first arose in the social science, psychological and clinical medical literature in the period between 1955 and 1985. During the same time period, the hospice and palliative care movements were developing and in part directed themselves against the perceived cultural denial of death in western society. While the denial of death has been taken for granted by the lay public as well as by clinicians, in the sociological literature it has been increasingly questioned. In this paper we use sociological critiques of the denial of death thesis to raise critical questions about the theory and practice of contemporary palliative care. In particular, we argue that the emphasis of palliative care should not be on extinguishing the denial of death but on the relief of suffering.

  3. [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

  4. Establishing research in a palliative care clinical setting: perceived barriers and implemented strategies.

    Science.gov (United States)

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

    2014-02-01

    There are many challenges in developing research projects in research-naïve clinical settings, especially palliative care where resistance to participate in research has been identified. These challenges to the implementation of research are common in nursing practice and are associated with attitudes towards research participation, and some lack of understanding of research as a process to improve clinical practice. This is despite the professional nursing requirement to conduct research into issues that influence palliative care practice. The purpose of this paper is to describe the process of implementing a clinical research project in collaboration with the clinicians of a palliative care community team and to reflect on the strategies implemented to overcome the challenges involved. The challenges presented here demonstrate the importance of proactively implementing engagement strategies from the inception of a research project in a clinical setting.

  5. The denial of death thesis: sociological critique and implications for palliative care.

    Science.gov (United States)

    Zimmermann, Camilla; Rodin, Gary

    2004-03-01

    It has become commonplace to say that contemporary western society is 'death-denying'. This characterization, which sociologists have termed the 'denial of death thesis', first arose in the social science, psychological and clinical medical literature in the period between 1955 and 1985. During the same time period, the hospice and palliative care movements were developing and in part directed themselves against the perceived cultural denial of death in western society. While the denial of death has been taken for granted by the lay public as well as by clinicians, in the sociological literature it has been increasingly questioned. In this paper we use sociological critiques of the denial of death thesis to raise critical questions about the theory and practice of contemporary palliative care. In particular, we argue that the emphasis of palliative care should not be on extinguishing the denial of death but on the relief of suffering. PMID:15046408

  6. 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.

  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. 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

  9. 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

  10. 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

  11. 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…

  12. 76 FR 59145 - Submission for OMB Review; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Science.gov (United States)

    2011-09-23

    ...-Life and Palliative Care Science Needs Assessment: Funding Source (Survey of Authors) Summary: Under... Request: NEW. Need and Use of Information Collection: The NINR End-of-Life Science Palliative Care (EOL PC... in the 30-day Federal Register Notice. Proposed Collection: Title: NINR End-of-Life and...

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

    Science.gov (United States)

    2011-06-16

    ...-of-Life and Palliative Care Science Needs Assessment: Funding Source Questionnaire (Survey of Authors...-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source Questionnaire will obtain... HUMAN SERVICES National Institutes of Health Proposed Collection; Comment Request; NINR End-of-Life...

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

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    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

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

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    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.

  16. 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

  17. 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

  18. 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.

  19. 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.

  20. Integrated oncology and palliative care: five years experience at the National Cancer Institute of Mexico.

    Science.gov (United States)

    Allende-Pérez, Silvia; Verástegui-Avilés, Emma; Mohar-Betancourt, Alejandro; Meneses-García, Abelardo; Herrera-Gómez, Angel

    2016-04-01

    Under the national plan for addressing cancer, prevention and detection play important roles. However, the cost of treatments and late diagnosis represent a significant burden on health services. At the National Cancer Institute, more than half of patients present with tumors in advanced stages, and approximately 10% of patients seen for the first time exhibit terminal-stage malignancies, where there are no feasible cancer treatment options, and the patients are instead admitted to the hospital exclusively for palliative symptomatic management. In 2010, the National Cancer Plan began implementing a model of integrative management of palliative care in oncology that has gradually come to include symptomatic palliative care, involving ambulatory, distant and hospitalized management of patients with cancer, in its final stages and, more recently, in earlier stages. PMID:27557392

  1. Interprofessional team building in the palliative home care setting: Use of a conceptual framework to inform a pilot evaluation.

    Science.gov (United States)

    Shaw, James; Kearney, Colleen; Glenns, Brenda; McKay, Sandra

    2016-01-01

    Home-based palliative care is increasingly dependent on interprofessional teams to deliver collaborative care that more adequately meets the needs of clients and families. The purpose of this pilot evaluation was to qualitatively explore the views of an interprofessional group of home care providers (occupational therapists, nurses, personal support work supervisors, community care coordinators, and a team coordinator) regarding a pilot project encouraging teamwork in interprofessional palliative home care services. We used qualitative methods, informed by an interprofessional conceptual framework, to analyse participants' accounts and provide recommendations regarding strategies for interprofessional team building in palliative home health care. Findings suggest that encouraging practitioners to share past experiences and foster common goals for palliative care are important elements of team building in interprofessional palliative care. Also, establishing a team leader who emphasises sharing power among team members and addressing the need for mutual emotional support may help to maximise interprofessional teamwork in palliative home care. These findings may be used to develop and test more comprehensive efforts to promote stronger interprofessional teamwork in palliative home health care delivery. PMID:27026192

  2. Interprofessional team building in the palliative home care setting: Use of a conceptual framework to inform a pilot evaluation.

    Science.gov (United States)

    Shaw, James; Kearney, Colleen; Glenns, Brenda; McKay, Sandra

    2016-01-01

    Home-based palliative care is increasingly dependent on interprofessional teams to deliver collaborative care that more adequately meets the needs of clients and families. The purpose of this pilot evaluation was to qualitatively explore the views of an interprofessional group of home care providers (occupational therapists, nurses, personal support work supervisors, community care coordinators, and a team coordinator) regarding a pilot project encouraging teamwork in interprofessional palliative home care services. We used qualitative methods, informed by an interprofessional conceptual framework, to analyse participants' accounts and provide recommendations regarding strategies for interprofessional team building in palliative home health care. Findings suggest that encouraging practitioners to share past experiences and foster common goals for palliative care are important elements of team building in interprofessional palliative care. Also, establishing a team leader who emphasises sharing power among team members and addressing the need for mutual emotional support may help to maximise interprofessional teamwork in palliative home care. These findings may be used to develop and test more comprehensive efforts to promote stronger interprofessional teamwork in palliative home health care delivery.

  3. 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

  4. 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.

  5. 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

  6. 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.

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

    Directory of Open Access Journals (Sweden)

    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.

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

    Directory of Open Access Journals (Sweden)

    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

  9. 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

  10. 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

  11. A desire to be seen: family caregivers' experiences of their caring role in palliative home care.

    Science.gov (United States)

    Linderholm, Märit; Friedrichsen, Maria

    2010-01-01

    Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.

  12. The idea of palliative and hospice care: a historical overview

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    Grażyna Kowalik

    2013-08-01

    Full Text Available In face of the final phase of a terminal disease, the patient’s family is always in a difficult position. A progressing chronic disease (especially cancer of one of the family members directly influences the mental and physical state of their closest of kin. Hospice care helps the dying patients and their families. The term “hospitium” is connected through classical Latin to the word “hospes”, which means a person connected with another in a lasting relationship arising out of hospitality, (a host taking care of newcomers, a traveller, or one visiting a road house. Whereas the concept of palliative care was derived from the following English words: palliate – to relieve pain; palliation – making the symptoms of a disease less severe without curing it. The hospice movement has a very long history, and reaches back to pagan traditions. Initially care was provided in shelters, asylums for the poor and inns. In France, a hospice (asylum founded in the 15th century for the care over the poorest stands to this day. A great change in the history of nursing was initiated in the 19th century. It was a time of intensive development for medicine and discoveries in the field of biology. Palliative and hospice care as well as palliative medicine owe their professional origins to C. Sanders, the founder of St Christopher’s Hospice in London in 1967. It is also known that in 1987, a palliative care ward began its functioning in Montreal. In Poland, the need to organise household care over seriously ill patients was noticed by H. Chrzanowska (1964, who is seen as the precursor of this kind of care. In the 1980s and 1990s, the idea of hospices experienced a real boom in Poland. Currently a hospice stands for a centre of care over patients in their so-called terminal phase of the disease, where interdisciplinary care is provided. This care creates the conditions for a dignified life until the very end, and thus suffering, pain and death are no

  13. Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association.

    Science.gov (United States)

    Braun, Lynne T; Grady, Kathleen L; Kutner, Jean S; Adler, Eric; Berlinger, Nancy; Boss, Renee; Butler, Javed; Enguidanos, Susan; Friebert, Sarah; Gardner, Timothy J; Higgins, Phil; Holloway, Robert; Konig, Madeleine; Meier, Diane; Morrissey, Mary Beth; Quest, Tammie E; Wiegand, Debra L; Coombs-Lee, Barbara; Fitchett, George; Gupta, Charu; Roach, William H

    2016-09-13

    The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements. PMID:27503067

  14. 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...

  15. Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association.

    Science.gov (United States)

    Braun, Lynne T; Grady, Kathleen L; Kutner, Jean S; Adler, Eric; Berlinger, Nancy; Boss, Renee; Butler, Javed; Enguidanos, Susan; Friebert, Sarah; Gardner, Timothy J; Higgins, Phil; Holloway, Robert; Konig, Madeleine; Meier, Diane; Morrissey, Mary Beth; Quest, Tammie E; Wiegand, Debra L; Coombs-Lee, Barbara; Fitchett, George; Gupta, Charu; Roach, William H

    2016-09-13

    The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.

  16. Increasing access--a qualitative study of homelessness and palliative care in a major urban center.

    Science.gov (United States)

    Krakowsky, Yonah; Gofine, Mirriam; Brown, Pnina; Danziger, Jana; Knowles, Holly

    2013-05-01

    Rates of morbidity and mortality are significantly higher in homeless populations. Homeless people experience many barriers to receive adequate palliative care. This qualitative study examines how a major urban city's palliative care resources can be improved to increase access and better serve the homeless. Audiotaped interviews were preformed with 7 homeless care providers in Toronto, Canada, and their transcripts were analyzed using thematic analysis. The findings of the study suggest that in order to increase access and to serve the city's terminally ill homeless better, the following 4 areas must be addressed: (1) increasing positive interaction between the health care system and the homeless, (2) training staff to deal with the unique issues confronting the homeless, (3) providing patient-centered care, and (4) diversifying the methods of delivery.

  17. A systematic review of psychosocial interventions for family carers of palliative care patients

    Directory of Open Access Journals (Sweden)

    Thomas Kristina

    2010-08-01

    Full Text Available Abstract Background Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness. A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers. We wanted to discern whether or not the evidence base to support family carers has improved. Furthermore, undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration http://www.centreforpallcare.org. Methods A systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade. The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients. Studies were graded to assess their quality. Results A total of fourteen studies met the inclusion criteria. The focus of interventions included psycho-education, psychosocial support, carer coping, symptom management, sleep promotion and family meetings. Five studies were randomised controlled trials, three of which met the criteria for the highest quality evidence. There were two prospective studies, five pre-test/post-test projects and two qualitative studies. Conclusions The systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade. More rigorous

  18. 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.

  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. Prescribing of pain medication in palliative care: a survey in general practice

    NARCIS (Netherlands)

    S.D. Borgsteede; L. Deliens; W.W.A. Zuurmond; F.G. Schellevis; D.L. Willems; G. van der Wal; J.T.M. van Eijk

    2009-01-01

    Purpose To examine what pain and adjuvant medication is prescribed in palliative care patients at home in The Netherlands. Methods In a nationwide, representative, prospective study in general practice in The Netherlands, prescribed medication was registered in 95 general practices with a listed pop

  1. Prescribing of pain medication in palliative care: a survey in general practice.

    NARCIS (Netherlands)

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

    2009-01-01

    PURPOSE: To examine what pain and adjuvant medication is prescribed in palliative care patients at home in The Netherlands. METHODS: In a nationwide, representative, prospective study in general practice in The Netherlands, prescribed medication was registered in 95 general practices with a listed p

  2. Palliative care teaching in medical residency: a review of two POGO-e teaching products.

    Science.gov (United States)

    Lim, Lionel S; Kandavelou, Karthikeyan; Khan, Nabeela

    2012-06-01

    This is a comparison review of GeriaSims and Care of the Aging Medical Patient (CHAMP) modules addressing issues in palliative and hospice medicine found in the Portal of Geriatric Online Education, a free on-line repository of geriatric educational materials for medical educators. GeriaSims is a self-directed teaching module designed to systematically address many of the important questions involved in caring for individuals with chronic progressive and life-limiting illnesses. It is well suited for physicians, particularly medical residents and fellows in-training, who provide care for medically complicated elderly and terminally ill individuals. The CHAMP module is designed to familiarize physician educators with palliative and hospice medicine basics to teach residents and fellows through didactic slides, although it can probably be adapted for use by residents and fellows if audio commentary accompanies the slides. Both modules address practical approaches to addressing palliative care in patients and their families. They are useful teaching tools that address an important learning need and can be readily used to supplement current residency curriculum in hospice and palliative medicine.

  3. Organisation and Evaluation of General Palliative Care in a Danish Hospital

    DEFF Research Database (Denmark)

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

    2015-01-01

    locally – if at all – withinthe various departments and with no overall structure or policy. Conclusions: This study demonstrates weaknesses in the existing evaluation methods for generalist palliative care and highlights the lack of an overall policy, organization and goals for the provision...

  4. Getting the Message Across: Does the Use of Drama Aid Education in Palliative Care?

    Science.gov (United States)

    O'Connor, Margaret; Abbott, Jo-Anne; Recoche, Katrina

    2012-01-01

    Drama is a promising means of delivering educational messages in palliative care. Research studies have found drama to be an effective means of delivering educational messages in other domains of learning, such as teaching health education to children and adults and engaging the general public in health policy development. This paper discusses the…

  5. 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…

  6. 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

  7. 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.

  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. Pain and Symptom Management in Pediatric Palliative Care.

    Science.gov (United States)

    Komatz, Kelly; Carter, Brian

    2015-12-01

    Pain and symptom management is considered one of the cornerstones of palliative and hospice medicine. However, general clinicians and specialists are not usually comfortable addressing the most common forms of pain seen in the pediatric population. In addition, non-pain symptom management, especially when related to underlying chronic medical conditions, can be managed by the general clinician and specialists. The goal of this article is to educate clinicians about pain categories, taking a detailed pain history, and developing a plan for treatment, including nonpharmacologic methods. Finally, we discuss common symptoms in patients with chronic medical conditions, including first-line treatment options.

  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. Results of a transparent expert consultation on patient and public involvement in palliative care research

    Science.gov (United States)

    Daveson, Barbara A; de Wolf-Linder, Susanne; Witt, Jana; Newson, Kirstie; Morris, Carolyn; Higginson, Irene J; Evans, Catherine J

    2015-01-01

    Background: Support and evidence for patient, unpaid caregiver and public involvement in research (user involvement) are growing. Consensus on how best to involve users in palliative care research is lacking. Aim: To determine an optimal user-involvement model for palliative care research. Design: We hosted a consultation workshop using expert presentations, discussion and nominal group technique to generate recommendations and consensus on agreement of importance. A total of 35 users and 32 researchers were approached to attend the workshop, which included break-out groups and a ranking exercise. Descriptive statistical analysis to establish consensus and highlight divergence was applied. Qualitative analysis of discussions was completed to aid interpretation of findings. Setting/participants: Participants involved in palliative care research were invited to a global research institute, UK. Results: A total of 12 users and 5 researchers participated. Users wanted their involvement to be more visible, including during dissemination, with a greater emphasis on the difference their involvement makes. Researchers wanted to improve productivity, relevance and quality through involvement. Users and researchers agreed that an optimal model should consist of (a) early involvement to ensure meaningful involvement and impact and (b) diverse virtual and face-to-face involvement methods to ensure flexibility. Conclusion: For involvement in palliative care research to succeed, early and flexible involvement is required. Researchers should advertise opportunities for involvement and promote impact of involvement via dissemination plans. Users should prioritise adding value to research through enhancing productivity, quality and relevance. More research is needed not only to inform implementation and ensure effectiveness but also to investigate the cost-effectiveness of involvement in palliative care research. PMID:25931336

  13. Research on Cancer Palliative Care%肿瘤姑息治疗的研究

    Institute of Scientific and Technical Information of China (English)

    王杰军; 宋正波

    2016-01-01

    Cancer is the leading cause of death in China, and palliative care is an important treatment for patients with cancer. Studies have proved that positive palliative care can not only reduce the injuries caused by treatments, but also play role in extending the survival time, improving the quality of life, and promoting the reasonable and highly-effective use of the current medical resource. With the increasing challenge of population aging and high incidence rate of cancer in China, palliative care is becoming more and more important. However, palliative care of cancer in China is slowly developed, and the development of palliative care has a long way to go.%癌症目前居于我国居民死亡原因的首位。姑息治疗是癌症治疗中非常重要的一个部分。研究证实,积极的姑息治疗不仅能够降低对患者的创伤,而且对于延长患者生存时间,提高生活质量以及提高现有医疗资源的合理高效使用都起到重要的作用。随着我国老龄化社会的加剧,癌症发病率急剧上升,姑息治疗越来越重要。然而,肿瘤姑息治疗在我国一直发展缓慢。发展肿瘤姑息治疗对我们来讲任重而道远。

  14. 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

  15. 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

  16. Development of a standardised pro forma for specialist palliative care multidisciplinary team meetings.

    Science.gov (United States)

    Gallagher, Jennifer; Forman, Margaret Louise

    2012-05-01

    A pro forma of the caseload of the community palliative care clinical nurse specialists in the Central Lancashire Community Specialist Palliative Care Team was devised to provide a brief overview of each patient's plan of care for use in the multidisciplinary team meetings and as a consequence of preparing for the UK Department of Health's peer review process. The pro forma was also designed to be used in everyday clinical practice in Gold Standards Framework meetings in the community. It has been evaluated by the team and found to be helpful for highlighting key issues in clinical practice, such as symptoms, psychological and emotional needs, and Preferred Priorities of Care. Over the past 2 years, it has also complemented the organisation's drive to become 'paperless'. This article looks at how the pro forma was developed, how it has evolved over time, and how it works today. Consideration has also been given to its benefits and limitations.

  17. 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.

  18. 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

  19. Recruitment and Reasons for Non-Participation in a Family-Coping-Orientated Palliative Home Care Trial (FamCope)

    DEFF Research Database (Denmark)

    Ammari, Anne Birgitte Hjuler; Hendriksen, Carsten; Rydahl-Hansen, Susan

    2015-01-01

    Cancer patients and their family caregivers need support to cope with physical, psychosocial, and existential problems early in the palliative care trajectory. Many interventions target patient symptomatology, with health care professionals acting as problem-solvers. Family coping, however......, is a new research area within palliative care. The FamCope intervention was developed to test if a nurse-led family-coping-orientated palliative home care intervention would help families cope with physical and psychosocial problems at home--together as a family and in interaction with health care...... to participate in research aimed at family coping early in the palliative care trajectory. Patients with advanced cancer and their closest relative were recruited from medical, surgical, and oncological departments. Reasons for non-participation were registered and characteristics of participants and non...

  20. Palliative care needs at different phases in the illness trajectory: a survey study in patients with cancer.

    Science.gov (United States)

    Beernaert, K; Pardon, K; Van den Block, L; Devroey, D; De Laat, M; Geboes, K; Surmont, V; Deliens, L; Cohen, J

    2016-07-01

    Despite the growing consensus on the benefits of initiating palliative care early in the disease trajectory, it remains unclear at what point palliative care needs emerge. This study investigates quality of life and unmet palliative care needs at three phases in the cancer trajectory, curative, life-prolonging and most advanced (prognosis care needs within the domains of palliative care. We used European reference values of the EORTC QLQ-C30 to compare the mean scores with a norm group. The groups further on in the cancer trajectory reported statistically and clinically poorer functioning compared with earlier phases, also when controlled for the effects of sex, age or type of cancer. Higher symptom burdens for fatigue, pain, dyspnoea and appetite loss were found in groups further into the trajectory, p care needs of patients from diagnosis onwards.

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

    Directory of Open Access Journals (Sweden)

    Jensen Anders

    2008-01-01

    Full Text Available Abstract 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 improvement and attention should be drawn to the "professionalization" of the relatives and the need to strike a balance between their needs, wishes and resources in end-of-life care and bereavement.

  2. 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...

  3. 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...

  4. 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...

  5. 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...

  6. [Cultural approach in nursing care of North African Muslims needing palliative care].

    Science.gov (United States)

    Lepain, Catherine

    2003-03-01

    Working in a multi-cultural medical establishment, concerning both patients and nursing staff, calls for deliberations regarding the intercultural as well as palliative approach in nursing care. These deliberations are: 1) intra-personal, in questioning the nursing staff on his/her values, beliefs, convictions, personal culture and identity, as well as opinions regarding health, illness and death. 2) Interpersonal, in recognizing the other person through his/her culture, values, individuality, while taking into account his/her opinions on health, illness and death. The goal of this project is to initiate this intercultural approach by first studying the culture from the perspective of North African Muslims currently hospitalized. It will develop in three steps: The first step to consider consists in training health-care professionals. The second step will lead to the preparation of pedagogical support concerning "nursing care and North African culture". The third step should significantly demonstrate the intercultural approach in clinical nursing procedures. In the future, the project's aim should progress towards a health-care collaboration in which each patient feels implicated regardless of his/her condition, culture, beliefs, education or lifestyle. PMID:12749094

  7. 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.

  8. 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...

  9. A proposed systems approach to the evaluation of integrated palliative care

    Directory of Open Access Journals (Sweden)

    Krueger Paul

    2010-05-01

    Full Text Available Abstract Background There is increasing global interest in regional palliative care networks (PCN to integrate care, creating systems that are more cost-effective and responsive in multi-agency settings. Networks are particularly relevant where different professional skill sets are required to serve the broad spectrum of end-of-life needs. We propose a comprehensive framework for evaluating PCNs, focusing on the nature and extent of inter-professional collaboration, community readiness, and client-centred care. Methods In the absence of an overarching structure for examining PCNs, a framework was developed based on previous models of health system evaluation, explicit theory, and the research literature relevant to PCN functioning. This research evidence was used to substantiate the choice of model factors. Results The proposed framework takes a systems approach with system structure, process of care, and patient outcomes levels of consideration. Each factor represented makes an independent contribution to the description and assessment of the network. Conclusions Realizing palliative patients' needs for complex packages of treatment and social support, in a seamless, cost-effective manner, are major drivers of the impetus for network-integrated care. The framework proposed is a first step to guide evaluation to inform the development of appropriate strategies to further promote collaboration within the PCN and, ultimately, optimal palliative care that meets patients' needs and expectations.

  10. Living in liminality--being simultaneously visible and invisible: caregivers' narratives of palliative care.

    Science.gov (United States)

    Dahlborg Lyckhage, Elisabeth; Lindahl, Berit

    2013-01-01

    Palliative care is an integral part of care and takes place in many settings--including the home, special accommodations, and hospitals. However, research shows that palliative care often ends with a death in the hospital due to the heavy burden on the primary caregiver. This study explores the meaning of being the primary caregiver of a close one who is terminally ill and is based on qualitative interviews with six primary caregivers of a terminally ill individual at home. The findings are discussed in the light of the theoretical concepts of liminality, lived body, and power. A potential impending risk exists of being abandoned when one is the primary caregiver to a close one who is terminally ill. This situation calls for professional caregivers to take responsibility and to respond to these, often unspoken, needs. This is particularly important concerning bodily care and the medical treatment regimen. In addition, when friends and relatives are absent, there is an ethical demand on professional caregivers to compensate for this lack and to compensate for this need. Palliative home care demands care that is person-centered--including the individual's history, family and loved ones, and individual strengths and weaknesses.

  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. 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

  13. 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.

  14. 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

  15. 肿瘤姑息治疗研究进展%Research progress on oncology palliative care

    Institute of Scientific and Technical Information of China (English)

    彭昕; 闻曲; 毛菲; 包莹琦

    2015-01-01

    Based on the latest published 2015 NCCN Clinical Practice Guidelines in Oncology Pallitive Care,this paper introduced the research progress on palliative care,which included overview,the first and overall assessment of palliative care. Besides,this paper introduced interventions of palliative care,so as to promote the development of palliative care in China.%文章基于2015版肿瘤姑息治疗指南,综述了肿瘤姑息治疗的进展,包括姑息治疗的概述,姑息治疗的首次评估、全面评估和姑息治疗的干预措施,以期促进我国护理姑息治疗的发展。

  16. The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease.

    Science.gov (United States)

    Bertaud, Sophie; Lloyd, David F A; Laddie, Joanna; Razavi, Reza

    2016-10-01

    Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real risk of premature death on many occasions throughout their childhood. In this paper, we discuss the advantages of a fully integrated palliative care ethos in patients with CHD, offering the potential for improved symptom control, more informed decision-making and enhanced support for patients and their families throughout their disease trajectory. These core principles may be delivered alongside expert cardiac care via non-specialists within pre-existing networks or via specialists in paediatric palliative care when appropriate. By broaching these complex issues early-even from the point of diagnosis-an individualised set of values can be established around not just end-of-life but also quality-of-life decisions, with clear benefits for patients and their families regardless of outcome.

  17. 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.

  18. 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

  19. 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

  20. 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.

  1. 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

  2. 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

  3. 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

  4. 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.

  5. 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

  6. 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

  7. 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 ...

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

    OpenAIRE

    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 ...

  9. 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

  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. 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.

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

    Directory of Open Access Journals (Sweden)

    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.

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

    Directory of Open Access Journals (Sweden)

    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.

  14. Terms of the ICNP® used by the team of nurses assisting people in palliative care

    Directory of Open Access Journals (Sweden)

    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.

  15. [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

  16. The Changes of Ethical Dilemmas in Palliative Care. A Lesson Learned from Comparison Between 1998 and 2013 in Taiwan.

    Science.gov (United States)

    Chih, An-Hsuan; Su, Peijen; Hu, Wen-Yu; Yao, Chien-An; Cheng, Shao-Yi; Lin, Yen-Chun; Chiu, Tai-Yuan

    2016-01-01

    The current ethical dilemmas met by healthcare professionals were never compared with those 15 years ago when the palliative care system was newly developing in Taiwan. The aim of the study was to investigate the ethical dilemmas met by palliative care physicians and nurses in 2013 and compare the results with the survey in 1998. This cross-sectional study surveyed 213 physicians and nurses recruited from 9 representative palliative care units across Taiwan in 2013. The compared survey in 1998 studied 102 physicians and nurses from the same palliative care units. All participants took a questionnaire to survey the "frequency" and "difficulty" of 20 frequently encountered ethical dilemmas, which were grouped into 4 domains by factor analysis. The "ethical dilemma" scores were calculated and then compared across 15 years by Student's t tests. A general linear model analysis was used to identify significant factors relating to a high average "ethical dilemma" score in each domain. All of the highest-ranking ethical dilemmas in 2013 were related to insufficient resources. Physicians with less clinical experience had a higher average "ethical dilemma" score in clinical management. Physicians with dissatisfaction in providing palliative care were associated a higher average "ethical dilemma" score in communication. Nurses reported higher "ethical dilemma" scores in all items of resource allocation in 2013. Further analysis confirmed that, in 2013, nurses had a higher average "ethical dilemma" score in resource allocation after adjustment for other relating factors. Palliative care nursing staff in Taiwan are more troubled by ethical dilemmas related to insufficient resources than they were 15 years ago. Training of decision making in nurses under the framework of ethical principles and community palliative care programs may improve the problems. To promote the dignity of terminal cancer patients, long-term fundraising plans are recommended for countries in which the

  17. [Psychiatric disorders in palliative care and at the end of life].

    Science.gov (United States)

    Reich, Michel

    2015-04-01

    Patients confronted to advanced organic diseases at a palliative stage can present psychological distress that might announce the occurrence of genuine psychiatric disorders. Some frequent and comprehensible symptoms such as sadness, mild agitation, anxiety or more disturbing such as hallucinations, delusions or suicidal ideations must alert the clinician who should not minimize them by attributing them in a reactive way to the consequences of the evolution of physical disease or treatment's side effects. Literature data regarding psychiatric disorders (mainly anxiety disorders, delirium and depressive disorders) in palliative care are emerging and can guide clinicians in their role to detect them and providing early and efficient management. Occurrence of warning symptoms of psychiatric disorders can impaired quality of life and impact the prognosis of patients already weakened by the context of an advanced physical disease. The clinician will have to be careful to any psychiatric prodromic symptom and not hesitate to treat and to refer if necessary to a heath mental professional. PMID:25767042

  18. Top 10 Tips About the Physician Quality Reporting System for Palliative Care Professionals.

    Science.gov (United States)

    Bull, Janet; Kamal, Arif H; Jones, Christopher; Bonsignore, Lindsay; Acevedo, Jean

    2016-08-01

    The U.S. healthcare system is shifting from a fee-for-service (FFS) system to a valued-based reimbursement system focused on improving the quality of healthcare. The Centers for Medicare and Medicaid Services (CMS) implemented the Physician Quality Reporting System (PQRS) as an important component of this transition. All clinicians, including physicians, nurse practitioners, or physician assistants who bill to Medicare Part B FFS, should submit quality data to the PQRS in 2015 or they will receive up to a 4% negative reimbursement penalty in 2017. As implementing and reporting PQRS measures can be a daunting task, especially for palliative care professionals, this article provides high priority tips identified by the authors for PQRS reporting in the palliative care field.

  19. 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.

  20. A cross-sectional survey of the activity of palliative care teams in Portugal.

    Science.gov (United States)

    Gonçalves, Ferraz; Almeida, Ana; Antunes, Catarina; Cardoso, Alice; Carvalho, Margarida; Claro, Maria; Coimbra, Francisca; Diniz, Inês; Fonseca, Bruno; Fradique, Emília; Gonçalves, Edna; Gonçalves, Florbela; Gonçalves, Maria; Magalhães, Américo; Pina, Paulo; Pires, Conceição; Silva, Paula; Silva, Ricardo; Silva, Rui; Tavares, Filipa; Teixeira, Laura

    2013-11-01

    Of the 21 Portuguese teams identified, 10 accepted to participate in the study. A total of 164 patients were included with a median of 15.5 per team (4-32). Of all the patients included, 60 (37%) were identified as inpatients in palliative care units; 59 (36%) by an intrahospital support team; 26 (16%) as outpatients; and 19 (12%) at home. The median age was 71 years (16-95). Fifty-one percent were females. The diagnosis was cancer in 151 (92%) patients. The most common cancer was colorectal in 22 (15%) patients, followed by gastric 17 (11%), head and neck 17 (11%), breast 15 (10%), and lung cancers 14 (9%). All patients were treated by doctors and nurses experienced in palliative care.

  1. 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...

  2. Palliative care in Parkinson′s disease: Role of cognitive behavior therapy

    Directory of Open Access Journals (Sweden)

    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.

  3. Benefit and challenges of collaberative research: lessons from supportive and palliative care.

    OpenAIRE

    Payne, S. Seymour, J. Molassiotis, A. Froggatt, K. Grande, G. Lloyd-Williams, M. Foster, C. Wilson, R. Rolls, L. Todd, C. Addington-Hall, J.

    2011-01-01

    Objective To describe the processes of establishing and running the Cancer Experiences Collaborative (CECo), and reflect upon the benefits and challenges of undertaking collaborative research in supportive and palliative care. Design A descriptive analysis of a 5-year research collaborative initiated in 2006. Setting Research groups at the Universities of Lancaster, Liverpool, Manchester, Nottingham and Southampton, England. Participants 26 UK organisations including the four largest hospices...

  4. 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...

  5. The communication of the nursing team with patients in palliative care

    OpenAIRE

    Alves, Everton Fernando

    2013-01-01

    The article consists of a contextualized reflection on the communication in palliative care with the purpose of explaining strategies used for effective communication among the nursing, terminally ill and his family. In that sense, it was observed that for the nurse to assist the terminally ill is a difficult task, which raises sensation of sadness, frustration, impotence and even failure in the rendered attendance. This way, many professionals use denial, escaping, and the ...

  6. Effects of vibroacoustic stimulation in music therapy for palliative care patients: a feasibility study

    OpenAIRE

    Warth, Marco; Kessler, Jens; Kotz, Svenja; Hillecke, Thomas K; Bardenheuer, Hubert J.

    2015-01-01

    Background: The present study aimed at examining whether methodological strategies from a previously implemented study design could be transferred to the evaluation of the psychological and physiological effects of a music therapy intervention working with vibroacoustic stimulation in palliative care. Method: Nine participants suffering from advanced cancer took part in single-sessions of music therapy, lasting for 30 min. The live music therapy intervention utilized singing chair sounds an...

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

    OpenAIRE

    Vladimir Araujo de Silva; Neide Aparecida Titonelli Alvim; Sonia Silva Marcon

    2014-01-01

    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....

  8. Music-based interventions in palliative cancer care: a review of quantitative studies and neurobiological literature

    OpenAIRE

    Archie, Patrick; Bruera, Eduardo; Cohen, Lorenzo

    2013-01-01

    Purpose This study aimed to review quantitative literature pertaining to studies of music-based interventions in palliative cancer care and to review the neurobiological literature that may bare relevance to the findings from these studies. Methods A narrative review was performed, with particular emphasis on RCTs, meta-analyses, and systematic reviews. The Cochrane Library, Ovid, PubMed, CINAHL Plus, PsycINFO, and ProQuest were searched for the subject headings music, music therapy, cancer, ...

  9. Moving toward a national policy on palliative and end of life care

    Directory of Open Access Journals (Sweden)

    Stanley C Macaden

    2011-01-01

    Full Text Available Indian Palliative Care has developed over the past 17 years but it has also developed disabilities due to lack of a National Policy and hence has compromised its effectiveness. It is true that we have come a long way but we still have many miles to go and we will get there only if we have a proper road map and sign posts. This article attempts to suggest some specific measures in establishing such a National Policy

  10. 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

  11. [In defense of society: the invention of palliative care and the production of subjectivities].

    Science.gov (United States)

    da Silva, Karen Schein; Kruse, Maria Henriqueta Luce

    2012-04-01

    This article is a theoretical reflection that is part of a study named Em Defesa da Sociedade: a invenção dos Cuidados Paliativos (In Defense of Society: the invention of Palliative Care). In order to articulate this discussion, we used the 2007edition of the Palliative Care Manual published by the World Health Organization (WHO), as we understand it is part of a body of work capable of producing subjectivities and ruling conduct. In this sense, we intend to understand how the discourses on palliative care are associated and promote the invention of a new subject that would work as a bio-political strategy in order to defend society. Based on the textual analysis of the discourse presented in the manual, with the help of the Cultural Studies framework and inspired by the works of Michel Foucault, we present one of the possible meanings derived from the readings of the WHO Guide. Thus, we observe the (re)organization and (re)invention of a subject that invests in the subjectivity of individuals and constitutes an actual framework that regulates and rules the population. PMID:22576552

  12. [In defense of society: the invention of palliative care and the production of subjectivities].

    Science.gov (United States)

    da Silva, Karen Schein; Kruse, Maria Henriqueta Luce

    2012-04-01

    This article is a theoretical reflection that is part of a study named Em Defesa da Sociedade: a invenção dos Cuidados Paliativos (In Defense of Society: the invention of Palliative Care). In order to articulate this discussion, we used the 2007edition of the Palliative Care Manual published by the World Health Organization (WHO), as we understand it is part of a body of work capable of producing subjectivities and ruling conduct. In this sense, we intend to understand how the discourses on palliative care are associated and promote the invention of a new subject that would work as a bio-political strategy in order to defend society. Based on the textual analysis of the discourse presented in the manual, with the help of the Cultural Studies framework and inspired by the works of Michel Foucault, we present one of the possible meanings derived from the readings of the WHO Guide. Thus, we observe the (re)organization and (re)invention of a subject that invests in the subjectivity of individuals and constitutes an actual framework that regulates and rules the population.

  13. Expert opinion on detecting and treating depression in palliative care: A Delphi study

    Directory of Open Access Journals (Sweden)

    Hotopf Matthew

    2011-05-01

    Full Text Available Abstract Background There is a dearth of data regarding the optimal method of detecting and treating depression in palliative care. This study applied the Delphi method to evaluate expert opinion on choice of screening tool, choice of antidepressant and choice of psychological therapy. The aim was to inform the development of best practice recommendations for the European Palliative Care Research Collaborative clinical practice guideline on managing depression in palliative care. Methods 18 members of an international, multi-professional expert group completed a structured questionnaire in two rounds, rating their agreement with proposed items on a scale from 0-10 and annotating with additional comments. The median and range were calculated to give a statistical average of the experts' ratings. Results There was contention regarding the benefits of screening, with 'routine informal asking' (median 8.5 (0-10 rated more highly than formal screening tools such as the Hospital Anxiety and Depression Scale (median 7.0 (1-10. Mirtazapine (median 9 (7-10 and citalopram (median 9 (5-10 were the considered the best choice of antidepressant and cognitive behavioural therapy (median 9.0 (3-10 the best choice of psychological therapy. Conclusions The range of expert ratings was broad, indicating discordance in the views of experts. Direct comparative data from randomised controlled trials are needed to strengthen the evidence-base and achieve clarity on how best to detect and treat depression in this setting.

  14. Asking questions of a palliative care nurse practitioner on a pancreatic cancer website

    Science.gov (United States)

    GRANT, MARIAN S.; WIEGAND, DEBRA L.; DY, SYDNEY M.

    2015-01-01

    Objective Increasing evidence demonstrates the benefits of online cancer interventions but very little about the needs of those with pancreatic cancer or interaction with online providers. Our study was done to (1) see how many people would visit a webpage where they could interact with a palliative care nurse practitioner (PCNP), (2) see how many would ask the PCNP questions, (3) determine the type of questions, and (4) obtain feedback regarding the usefulness of the webpage. Method Mixed-methods descriptive design. Results There were 2174 visits to the webpage, and a total of 84 participants sent 110 questions/comments. Some 28 (33%) were people worried that they might have pancreatic cancer. Most questions (59, 53%) had to do with palliative care issues, with the largest subgroup (26, 23%) involving psychological concerns. A total of 39 completed an online survey and were relatives (20, 52%), or patients (17, 44%). They rated the webpage at 3.3/4 as being helpful at learning about the physical symptoms/treatments of pancreatic cancer, at 3.1/4 for learning about emotional issues, at 3/4 for learning about palliative care, at 2.8/4 for learning about hospice, and at 3.3/4 for reading other people’s questions. Significance of results The PCNP webpage was a helpful resource. Most asking questions were worried about having or getting pancreatic cancer. More research is needed into online providers, interventions, and conducting research online. PMID:24909893

  15. Impact of Health Awareness Campaign in Improving the Perception of the Community about Palliative Care: A Pre- and Post-intervention Study in Rural Tamil Nadu

    Science.gov (United States)

    Chandra, Ankit; Sarkar, Sonali; Adinarayanan, S; Balajee, Karthik Laksham

    2016-01-01

    Background and Objective: The only way to provide palliative care to a huge number of people in need in India is through community participation, which can be achieved by improving the awareness of the people about palliative care. We conducted a study to assess the impact of health awareness campaign in improving the awareness of people about palliative care. Materials and Methods: This was a pre- and post-intervention study conducted in Kadaperikuppam village of Vanur Taluk in Villupuram district, Tamil Nadu. One respondent each from 145 households in the village was interviewed regarding the knowledge and attitude on palliative care before and after the health awareness campaign using a pretested questionnaire. Health awareness campaign consisted of skit, pamphlet distribution, poster presentation, giving door-to-door information, and general interaction with palliative team in the village. Results: The awareness regarding palliative care during the preintervention was nil. After the intervention, it increased to 62.8%. However, there was a decline in the attitude and the interest of the people toward palliative care. Interpretation and Conclusions: Health awareness campaigns can increase the awareness of people in the rural parts of the country about palliative care. However, to improve the attitude of the community about delivery of palliative care services, more sustained efforts are required to make them believe that palliative care can be provided by community volunteers also and not necessarily only by professionals. PMID:27803570

  16. Participation of radiotherapy in interdisciplinary palliative care units. Challenge and chance; Strahlentherapeutische Beteiligung an interdisziplinaeren palliativmedizinischen Einrichtungen. Herausforderung und Chance

    Energy Technology Data Exchange (ETDEWEB)

    Momm, F.; Frommhold, H. [Abt. fuer Strahlenheilkunde, Radiologische Universitaetsklinik, Freiburg i. Br. (Germany); Becker, G. [Abt. fuer Innere Medizin II, Universitaetsklinikum Freiburg, Freiburg i. Br. (Germany); Ewald, H. [Klinik fuer Strahlentherapie (Radioonkologie), Universitaetsklinikum Schleswig-Holstein, Kiel (Germany); Baumgartner, J. [Medizinische Direktion, Steiermaerkische Krankenanstaltenges.m.b.H., Graz (Austria); Adamietz, I.A. [Klinik fuer Strahlentherapie und Radio-Onkologie, Marienhospital Herne - Universitaetsklinik (Germany)

    2004-02-01

    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.) [German] Hintergrund: In Deutschland besteht derzeit eine erhebliche Unterversorgung mit palliativmedizinischen Einrichtungen. Berichtet wird ueber Moeglichkeiten und Chancen einer strahlentherapeutischen Beteiligung an der Weiterentwicklung dieses zukunftweisenden zweiges aerztlichen, pflegerischen und psychosozialen Handelns. Material und Methodik: Erfahrungen aus der interdisziplinaeren Zusammenarbeit zwischen Palliativmedizin und Strahlentherapie in Deutschland werden

  17. Evaluation of hospital palliative care teams: strengths and weaknesses of the before-after study design and strategies to improve it.

    Science.gov (United States)

    Simon, S; Higginson, I J

    2009-01-01

    Hospital palliative care teams (HPCTs) are well established as multi-professional services to provide palliative care in an acute hospital setting and are increasing in number. However, there is still limited evaluation of them, in terms of efficacy and effectiveness. The gold standard method of evaluation is a randomised control trial, but because of methodological (e.g., randomisation), ethical and practical difficulties such trials are often not possible. HPCT is a complex intervention, and the specific situation in palliative care makes it challenging to evaluate (e.g., distress and cognitive impairment of patients). The quasi-experimental before-after study design has the advantage of enabling an experimental character without randomisation. But this has other weaknesses and is prone to bias, for example, temporal trends and selection bias. As for every study design, avoidance and minimisation of bias is important to improve validity. Therefore, strategies of selecting an appropriate control group or time series and applying valid outcomes and measurement tools help reducing bias and strengthen the methods. Special attention is needed to plan and define the design and applied method.

  18. Application of Transformational Leadership Principles in the Development and Integration of Palliative Care Within an Advanced Heart Failure Program.

    Science.gov (United States)

    George, Susan; Leasure, A Renee

    2016-01-01

    Heart failure (HF) is a major health problem in United States, and it has reached epidemic proportions. Heart failure is associated with significant morbidity, mortality, and cost. Although the prognosis of HF is worse than many forms of cancer, many patients, families, and clinicians are unaware of the dire prognosis. As the disease progress to advanced HF, patients are faced with many challenges, such as poor quality of life due to worsening symptoms and frequent hospitalizations. Heart failure management adds significant financial burden to the health care system. Palliative care can be integrated into HF care to improve quality of life and symptom management and to address physical, spiritual, and psychosocial needs of patients and families. Palliative care can be used concurrently with or independent of curative or life-prolonging HF therapies. Transformational leadership principles were used to guide the development of a plan to enhance integration of palliative care within traditional advanced HF care. PMID:26836596

  19. Application of Transformational Leadership Principles in the Development and Integration of Palliative Care Within an Advanced Heart Failure Program.

    Science.gov (United States)

    George, Susan; Leasure, A Renee

    2016-01-01

    Heart failure (HF) is a major health problem in United States, and it has reached epidemic proportions. Heart failure is associated with significant morbidity, mortality, and cost. Although the prognosis of HF is worse than many forms of cancer, many patients, families, and clinicians are unaware of the dire prognosis. As the disease progress to advanced HF, patients are faced with many challenges, such as poor quality of life due to worsening symptoms and frequent hospitalizations. Heart failure management adds significant financial burden to the health care system. Palliative care can be integrated into HF care to improve quality of life and symptom management and to address physical, spiritual, and psychosocial needs of patients and families. Palliative care can be used concurrently with or independent of curative or life-prolonging HF therapies. Transformational leadership principles were used to guide the development of a plan to enhance integration of palliative care within traditional advanced HF care.

  20. Evolution of acute orthopaedic care.

    Science.gov (United States)

    Mamczak, Christiaan N; Born, Christopher T; Obremskey, William T; Dromsky, David M

    2012-01-01

    Current combat battlefield injuries are among the most complex and challenging orthopaedic cases. These injuries carry high risks for exsanguination and global contamination of extensive soft-tissue and complicated bony injuries. Military orthopaedic surgeons must employ the latest advances in acute combat casualty care to achieve favorable outcomes. Adaptive changes over the past 10 years of war have given today's surgeons the armamentarium to optimize patient care. Innovative methods of damage control resuscitation and surgery have led to increased survival. However, the fundamentals of surgical hemostasis and decontamination remain critical to successful management. The acute treatment of combat casualties involves a continuum of care from the point of injury through transport out of theater. Future research and education are paramount to better prepare military orthopaedic surgeons to further increase survivability and enhance the outcomes of service members with complex wounds.

  1. Polyclinic of Oncology and Palliative Care Las Piedras Hospital: 5-year experience (1999-2004)

    International Nuclear Information System (INIS)

    Objectives: To analyze the clinical characteristics, treatments and instituted care profile of patients seen at the Polyclinic of Oncology and Care Las Piedras Hospital Palliative since its inception in 1999 to date. Patients and Methods: All patients (. Ptes) were included in that assisted Polyclinic for the period 09/01/99 to 08/31/04. The characteristics were analyzed clinical population (gender, age, type of tumor), the different treatments (ttos.) instituted (chemotherapy (CT), hormone therapy (HT), interferon (IFN) radiotherapy (RT), exclusive control and palliative care (PC) in the latter used as an indicator of morphine use and care indicators (number consultations per year, average patients per visit, etc.). Results: In the whole period were assisted 231 patients (116 men and 115 women) consultations in 1403 for a total of 148 days of consultations with a average of 9.5 consultations per day of consultation. Each patient consulted on average between 4 and 6 times per year. The median age of the population was 64 years (range 5-94 years). 47% of total ptes. (n = 109) was in the range of 61 to 80 years of age at diagnosis. Types tumors were found more often breast (18%), lung (16%), digestive (18% and within these colo-rectal and stomach 38% 28% were the most Frequently) and genitourinary (11%: 38% prostate, kidney, 31%). Regarding treatments of all cancer patients, where each patient during evolution may have received more than one type of treatment, 33% received QT / HT / IFN, 10% RT, 20% exclusive control and 49% CP, of which 71% received morphine. Conclusions: The clinical characteristics and care profile of the population studied correspond to the country. Half of the patients arrive assisted receiving palliative care with good percentage (71%) of administration morphine

  2. Understanding Models of Palliative Care Delivery in Sub-Saharan Africa: Learning From Programs in Kenya and Malawi.

    Science.gov (United States)

    Downing, Julia; Grant, Liz; Leng, Mhoira; Namukwaya, Elizabeth

    2015-09-01

    The need for palliative care has never been greater. From being significantly present in only five African countries in 2004, palliative care is now delivered in nearly 50% of African countries; however, less than 5% of people in need receive it. To scale-up palliative care, we need greater knowledge about how different models of palliative care work within different health systems. A case study evaluation was undertaken in Kenya and Malawi to define the models used, contextualize them, and identify challenges, best practices, and transferable lessons for scale-up. Visits were made to seven sites and, using an audit tool, data were collected from program staff, hospital staff, and local stakeholders, and care observed as appropriate. Three models of palliative care service delivery were identified, which supports the existing literature, that is, specialist, district hospital level, and community level. However, in looking further, findings show that the major determinants for each model were a set of philosophical questions and assumptions underpinning each and influencing staff and patient decision-making, planning, and allocation of resources. The health system structure and the beliefs about palliative care determined, and were determined most by, referrals, the patient journey, the centeredness of the model, and role definition and training. The models are also closely associated with the physical setting of services. Understanding how the services have developed because of, and indeed despite the geographical setting and the system level, provides us with a different set of indicators of program structure incorporated into the three models. The analysis of models provides pointers to future planning for palliative care. PMID:25936938

  3. [Specifics of Analgesia in Palliative Care Patients at Home].

    Science.gov (United States)

    Pautex, Sophie

    2015-02-25

    Pain management at home for a patient, suffering from one or more advanced progressive diseases, goes beyond the prescription of an opioid. Apart from the importance of finding the most suitable analgesic drug (controlled pain with least possible adverse effects), three important dimensions will be addressed: interprofessionnal care (shared care goals, evaluation, monitoring of pain and other symptoms; physiotherapy, etc.) information, education and support for patients and relatives in particular on the use of opioids, and finally the importance of anticipation. This includes for example the requirement of breakthrough pain treatment in case of pain exacerbation or the definition of the place of hospitalization in case of worsening general condition or of death.

  4. A prospective evaluation of Dignity Therapy in advanced cancer patients admitted to palliative care

    DEFF Research Database (Denmark)

    Houmann, Lise Jul; Chochinov, Harvey M; Kristjanson, Linda J;

    2014-01-01

    and a hospital palliative medicine unit.Results:Over 2 years, 80 of 341 eligible patients completed Dignity Therapy. At T1, 55 patients completed evaluations, of whom 73%-89% found Dignity Therapy helpful, satisfactory and of help to relatives; 47%-56% reported that it heightened their sense of purpose, dignity......Background:Dignity Therapy is a brief, psychosocial intervention for patients with incurable disease.Aim:To investigate participation in and evaluation of Dignity Therapy and longitudinal changes in patient-rated outcomes.Design:A prospective (pre/post) evaluation design was employed. Evaluation.......02)) improved. Patients with children and lower performance status, emotional functioning and quality of life were more likely to report benefit.Conclusions:This study adds to the growing body of evidence supporting Dignity Therapy as a valuable intervention in palliative care; a substantial subset of patients...

  5. Communication as an approach to resolve conflict about the implementation of palliative care.

    Science.gov (United States)

    Zhang, Zhe; Cheng, Wen-Wu

    2014-05-01

    The main aim of palliative care is to provide relief from pain and distressing symptoms and to offer psychological and spiritual support to enhance the quality of life. We present a case of an elderly Chinese patient with major depressive disorder who was a doctor himself, and through his experience of treating patients had become afraid about the complications of advanced disease. He wished to forego treatment, which was in conflict with those of his family. This report highlights the role of the palliative medical team in improving outcomes through enabling communication to occur between the family and the patient to achieve the best outcomes. This should lead to better training provision for the involved medical staff.

  6. Improving the quality of palliative care for ambulatory patients with lung cancer

    DEFF Research Database (Denmark)

    von Plessen, Christian; Aslaksen, Aslak

    2005-01-01

    and energy in organisational aspects of care that could be better used in direct interaction with patients. DESIGN: Quality improvement study using direct observation and run and flow charts, and focus group meetings with patients and families regarding perceptions of the clinic and with staff regarding...... satisfaction with working conditions. SETTING: Thoracic oncology outpatient clinic at a Norwegian university hospital where patients receive chemotherapy and complementary palliative care. KEY MEASURES FOR IMPROVEMENT: Waiting time and time wasted during consultations; calmer working situation at the clinic...

  7. Music Therapy in Hospice and Palliative Care: a Review of the Empirical Data

    OpenAIRE

    Russell E. Hilliard

    2005-01-01

    Although music therapy is an established allied health profession and is used with increasing frequency in the treatment of those with a terminal illness, there is a real dearth of empirical research literature supporting the use of music therapy in end-of-life care. This article reviews the empirical studies found in the literature and documents the emergence of an evidenced-based approach to the use of music therapy in hospice and palliative care. A total of 11 studies are reviewed; of th...

  8. Managing acute care.

    Science.gov (United States)

    Russell, J S

    1993-02-01

    In the last few years, much medical-facility construction has been driven by what insurers want. Hospitals have built facilities for well-reimbursed procedures and closed money-losing ones. Health-maintenance organizations increasingly expect to hold down costs by making prepayment arrangements with doctors and their hospitals. President Clinton has pledged early action on health-care reform, which will likely change planners' priorities. Whether the nation goes to Clintonian "managed competition" or a Canadian-style nationwide single-payer system (the two most likely options), the projects on these pages reflect two large-scale trends that are likely to continue: the movement of more procedures from inpatient to outpatient facilities and the separation of treatment functions from ordinary office and administrative tasks so that the latter are not performed in the same high-cost buildings as technology-intensive procedures. Various schemes that make care more "patient-centered" have been tried and been shown to speed healing, even for outpatients, but such hard-to-quantify issues get short shrift in an era of knee-jerk cost containment. The challenge in tomorrow's healthcare universe--whatever it becomes--will be to keep these issues on the table.

  9. Pain medicine and palliative care as an alternative to euthanasia in end-of-life cancer care.

    Science.gov (United States)

    Erdek, Michael

    2015-05-01

    There exists support for euthanasia or physician-assisted suicide (PAS) in cases of terminal cancer. One of the premises for this approach is the goal of the alleviation of suffering. Do current means of pain control in the greater overall setting of palliative care serve as a desirable alternative? A contrast comparison may be drawn between the above approaches using both theological and medical sources to show that the enlightened use of both interventional and non-interventional pain medicine approaches in an integrated palliative care setting are a theologically grounded and medically feasible alternative to euthanasia or PAS in this population. Lay summary: Patients suffering from terminal cancer often have pain. Some have advocated euthanasia or physician-assisted suicide as a potential way of alleviating this suffering. Further examination of this topic, however, shows this approach may be essentially utilitarian and fail to consider the inherent value of human life. There has been significant development in recent years in the fields of pain medicine and palliative care, which afford alternate means of addressing suffering in this patient population. PMID:25999611

  10. Cuidados paliativos: interfaces, conflitos e necessidades Palliative care: interfaces, conflicts and necessities

    Directory of Open Access Journals (Sweden)

    Ciro Augusto Floriani

    2008-12-01

    Full Text Available O tipo de assistência prestado para pacientes com doenças avançadas e terminais tem sido objeto de intenso debate na literatura especializada. Este artigo descreve e analisa, a partir de revisão da literatura, as intervenções possíveis no fim da vida, com especial ênfase aos cuidados paliativos, um modelo em expansão no mundo. Analisa, a partir de uma perspectiva bioética, alguns dos aspectos moralmente relevantes que envolvem estas práticas, que tendem a ser conflituosas entre si, e, especificamente, dentro do campo dos cuidados paliativos, destaca certas dificuldades e desafios em torno da centralidade da autonomia, considerada um dos pilares para boas práticas de cuidados no fim da vida.The kind of care delivered to patients with advanced and terminal diseases has been under intense debate in the specialized literature. This paper describes and analyzes, on the basis of a bibliographic review, medical care practices at the end of life, with special emphasis to palliative care, a model expanding worldwide. It analyzes, from the perspective of bioethics, some morally relevant aspects involving these practices, that tend to conflict among themselves. Specifically in the field of palliative care the paper emphasizes certain difficulties and challenges involving autonomy, considered one of the cornerstones of good end of life care practices.

  11. Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study

    NARCIS (Netherlands)

    Beek, K.; Woitha, K.; Ahmed, N.; Menten, J.; Jaspers, B.; Engels, Y.; Ahmedzai, S.H.; Vissers, K.; Hasselaar, J.

    2013-01-01

    BACKGROUND: According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This pa

  12. Is the qualitative research interview an acceptable medium for research with palliative care patients and carers?

    Directory of Open Access Journals (Sweden)

    Shipman Cathy

    2008-04-01

    Full Text Available Abstract Background Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. Methods A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. Results The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. Conclusion The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview.

  13. Palliative and end of life care communication as emerging priorities in postgraduate medical education

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    des Ordons, Amanda Roze; Ajjawi, Rola; Macdonald, John; Sarti, Aimee; Lockyer, Jocelyn; Hartwick, Michael

    2016-01-01

    Background Reliance on surveys and qualitative studies of trainees to guide postgraduate education about palliative and end of life (EOL) communication may lead to gaps in the curriculum. We aimed to develop a deeper understanding of internal medicine trainees’ educational needs for a palliative and EOL communication curriculum and how these needs could be met. Methods Mixed methods, including a survey and focus groups with trainees, and interviews with clinical faculty and medical educators, were applied to develop a broader perspective on current experiences and needs for further education. Quantitative descriptive and thematic analyses were conducted. Results Surveyed trainees were least confident and least satisfied with teaching in counseling about the emotional impact of emergencies and discussing organ donation. Direct observation with feedback, small group discussion, and viewing videos of personal consultations were perceived as effective, yet infrequently identified as instructional methods. Focus groups and interviews identified goals of care conversations as the highest educational priority, with education adapted to learner needs and accompanied by feedback and concurrent clinical and organizational support. Conclusions Our work expands on previous research describing needs for postgraduate education in palliative and EOL communication to include the importance of support, culture change, and faculty development, and provides insight into why such needs exist. PMID:27103952

  14. Midwifing the End of Life: Expanding the Scope of Modern Midwifery Practice to Reclaim Palliative Care.

    Science.gov (United States)

    Van Hoover, Cheri; Holt, Lisa

    2016-05-01

    Historically, midwives held an important role in society as cradle-to-grave practitioners who eased individuals, families, and communities through difficult transitions across the life span. In the United States, during the first half of the 20th century, physicians assumed care for people during birth and death, moving these elements of the human experience from homes into the hospital setting. These changes in practice resulted in a dehumanization of birth and death experiences and led to detachment from what it means to be human among members of society. There is a current movement across the United States to incorporate palliative care and hospice care into both the home setting and the inpatient setting. Through their education and training, certified nurse-midwives/certified midwives (CNMs/CMs) are well equipped to serve as hospice and palliative care clinicians. Current midwives, skilled in assisting women and families through the transition of pregnancy to motherhood, can use their education and skills to help individuals and their families through the transition from life to death. The similarities between these states of the human experience (pregnancy to birth and terminal illness to death) allow for a fluidity between these experiences from the midwife perspective. The many parallels between these 2 elements of the human condition include stress, anxiety, and pain. Training in holistic approaches to symptom management and supporting individuals through difficult experiences (eg, birth) gives midwives a unique perspective that is readily translatable to assist individuals and families through the passage between life and death. PMID:27148997

  15. Denial of impending death: a discourse analysis of the palliative care literature.

    Science.gov (United States)

    Zimmermann, Camilla

    2004-10-01

    Terminally ill patients and their families are often referred to as being "in denial" of impending death. This study uses the qualitative method of discourse analysis to investigate the usage of the term "denial" in the contemporary hospice and palliative care literature. A Medline search (1970-2001) was performed combining the text words "deny" and "denial" with the subject headings "terminal care", "palliative care" and "hospice care," and restricted to English articles discussing death denial in adults. The 30 articles were analysed using a constant comparison technique and emerging themes regarding the meaning and usage of the words "deny" and "denial" identified. This paper focusses on the theme of denial as an individual psychological process. Three dominant subthemes were distinguished: denial as an unconscious "defence mechanism", denial as "healthy" and denial as temporary. The analysis focusses on the intertextuality of these themes with each other and with previous texts on the denial of death. Elements of the psychoanalytic definition of denial as an unconscious defence mechanism are retained in the literature but are interwoven with new themes on patient choice. The result is an overall discourse that is conflictual and at times self-contradictory but overall consistent with the biomedical model of illness. I suggest that the representation of death denial elaborated in these articles may be related to a larger discourse on dying in contemporary Western society, which both invites patients to participate in the planning of their death and labels those who do not comply. PMID:15279932

  16. Acute childhood leukemia: Nursing care

    International Nuclear Information System (INIS)

    Modern therapy for childhood acute leukemia has provided a dramatically improved prognosis over that of just 30 years ago. In the early 1960's survival rates for acute lymphocytic leukemia (ALL) and acute myelogenous leukemia (AML) were 4% and 3%, respectively. By the 1980's survival rates had risen to 72% for all and 25% to 40% for AML. Today, a diagnosis of all carries an 80% survival rate and as high as a 90% survival rate for some low-risk subtypes. Such high cure rates depend on intense and complex, multimodal therapeutic protocols. Therefore, nursing care of the child with acute leukemia must meet the demands of complicated medical therapies and balance those with the needs of a sick child and their concerned family. An understanding of disease process and principles of medical management guide appropriate and effective nursing interventions. Leukemia is a malignant disorder of the blood and blood- forming organs (bone marrow, lymph nodes and spleen). Most believe that acute leukemia results from a malignant transformation of a single early haematopoietic stem cell that is capable of indefinite self-renewal. These immature cells of blasts do not respond to normal physiologic stimuli for differentiation and gradually become the predominant cell in the bone marrow

  17. Nurses experiences in palliative care of terminally-ill HIV patients in a level 1 district hospital

    Directory of Open Access Journals (Sweden)

    Nokwanda E. Bam

    2014-07-01

    Full Text Available Background: Whilst the discourse of palliative care in HIV management is largely documented and regarded as being an essential component, various authors have further argued that within the context of HIV care in sub-Saharan Africa, palliative care and exploration of the dimensions thereof is largely lacking. This article presents the lived experiences of nurses involved in palliative care, thus providing the perspective of nurses and the multi-faceted dimensions of the nature of caring inherent. Objectives: This study explored the respondents’ understanding of the concepts ‘caring’ and ‘terminal patient’ and described the experiences of nurses caring for terminally-ill patients with HIV and how these experiences influence the nature of care rendered. Methods: Qualitative research using Husserl’s approach of phenomenology design underpinned the study and Giorgi’s steps of analysis were used to make meaning of the data. Results: The concept ‘caring’ was experienced by the nurses as transforming the patients’ quality of life through supportive care and hope for life. Palliative care made the nurses conscious of their own mortality, enabling them to be more sensitive, compassionate and dedicated to caring for their patients. The findings described the social networking that enabled nurses to collaborate with colleagues in the interdisciplinary teams and shared knowledge, skills and support within the palliative care team in order to optimise patient outcomes. Conclusion: Nurses with prolonged involvement in caring for terminally-ill patients with HIV experienced helplessness and emotional stress. Recommendations based on the results are that training in psychological and holistic care of the patient, professional counselling and stress management services are needed to support the nurse in this context.

  18. Provision of Palliative Care in Low- and Middle-Income Countries: Overcoming Obstacles for Effective Treatment Delivery.

    Science.gov (United States)

    Hannon, Breffni; Zimmermann, Camilla; Knaul, Felicia M; Powell, Richard A; Mwangi-Powell, Faith N; Rodin, Gary

    2016-01-01

    Despite being declared a basic human right, access to adult and pediatric palliative care for millions of individuals in need in low- and middle-income countries (LMICs) continues to be limited or absent. The requirement to make palliative care available to patients with cancer is increasingly urgent because global cancer case prevalence is anticipated to double over the next two decades. Fifty percent of these cancers are expected to occur in LMICs, where mortality figures are disproportionately greater as a result of late detection of disease and insufficient access to appropriate treatment options. Notable initiatives in many LMICs have greatly improved access to palliative care. These can serve as development models for service scale-up in these regions, based on rigorous evaluation in the context of specific health systems. However, a multipronged public health approach is needed to fulfill the humane and ethical obligation to make palliative care universally available. This includes health policy that supports the integration of palliative care and investment in systems of health care delivery; changes in legislation and regulation that inappropriately restrict access to opioid medications for individuals with life-limiting illnesses; education and training of health professionals; development of a methodologically rigorous data and research base specific to LMICs that encompasses health systems and clinical care; and shifts in societal and health professional attitudes to palliative and end-of-life care. International partnerships are valuable to achieve these goals, particularly in education and research, but leadership and health systems stewardship within LMICs are critical factors that will drive and implement change. PMID:26578612

  19. Compared to Palliative Care, Working in Intensive Care More than Doubles the Chances of Burnout: Results from a Nationwide Comparative Study

    Science.gov (United States)

    Teixeira, Carla Margarida; Carvalho, Ana Sofia; Hernández-Marrero, Pablo

    2016-01-01

    Introduction Professionals working in intensive and palliative care units, hence caring for patients at the end-of-life, are at risk of developing burnout. Workplace conditions are determinant factors to develop this syndrome among professionals providing end-of-life care. Objectives To identify and compare burnout levels between professionals working in intensive and palliative care units; and to assess which workplace experiences are associated with burnout. Methods A nationwide, multicentre quantitative comparative survey study was conducted in Portugal using the following instruments: Maslach Burnout Inventory–Human Services Survey, Questionnaire of workplace experiences and ethical decisions, and Questionnaire of socio-demographic and professional characteristics. A total of 355 professionals from 10 intensive care and 9 palliative care units participated in the survey. A series of univariate and multivariate logistic regression analyses were performed; odds ratio sidelong with 95% confidence intervals were calculated. Results 27% of the professionals exhibited burnout. This was more frequent in intensive care units (OR = 2.525, 95% CI: 1.025–6.221, p = .006). Univariate regression analyses showed that higher burnout levels were significantly associated with conflicts, decisions to withhold/withdraw treatment, and implementing palliative sedation. When controlling for socio-demographic and educational characteristics, and setting (intensive care units versus palliative care units), higher burnout levels were significantly and positively associated with experiencing conflicts in the workplace. Having post-graduate education in intensive/palliative care was significantly but inversely associated to higher burnout levels. Conclusions Compared to palliative care, working in intensive care units more than doubled the likelihood of exhibiting burnout. Experiencing conflicts (e.g., with patients and/or families, intra and/or inter-teams) was the most significant

  20. 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...... improvement and attention should be drawn to the "professionalization" of the relatives and the need to strike a balance between their needs, wishes and resources in end-of-life care and bereavement....