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 ...
... spiritual beliefs; they can also provide grief counseling massage therapists who promote relaxation, help patients and families ... too. Family members caring for seriously ill children face numerous challenges, and palliative care programs can help ...
Rodríguez-Calero, Miguel Ángel; Julià-Mora, Joana María; Prieto-Alomar, Araceli
Previous to wider prevalence studies, we designed the present pilot study to assess concordance and time invested in patient evaluations using a palliative care needs assessment tool. We also sought to estimate the prevalence of palliative care needs in an acute care hospital unit. A cross-sectional study was carried out, 4 researchers (2 doctors and 2 nurses) independently assessed all inpatients in an acute care hospital unit in Manacor Hospital, Mallorca (Spain), using the validated tool NECPAL CCOMS-ICO©, measuring time invested in every case. Another researcher revised clinical recordings to analise the sample profile. Every researcher assessed 29 patients, 15 men and 14 women, mean age 74,03 ± 10.25 years. 4-observer concordance was moderate (Kappa 0,5043), tuning out to be higher between nurses. Mean time per patient evaluation was 1.9 to 7.72 minutes, depending on researcher. Prevalence of palliative care needs was 23,28%. Moderate concordance lean us towards multidisciplinary shared assessments as a method for future research. Avarage of time invested in evaluations was less than 8 minutes, no previous publications were identified regarding this variable. More than 20% of inpatients of the acute care unit were in need of palliative care. Copyright © 2015 Elsevier España, S.L.U. All rights reserved.
Background and aim: Quality improvement is continuously ongoing at different levels in our healthcare system. In Sweden, as in other countries, guidelines are important for quality improvement in healthcare, since they summarize the best available evidence. Improved living conditions and enhanced treatments for a variety of diseases have resulted in increased longevity and the need for palliative care has therefore also increased. A high proportion of deaths occur in acute care...
Fox, Jennifer; Windsor, Carol; Connell, Shirley; Yates, Patsy
The positioning and meaning of palliative care within the healthcare system lacks clarity which adds a level of complexity to the process of transition to palliative care. This study explores the transition to the palliative care process in the acute care context of metastatic melanoma. A theoretical framework drawing on interpretive and critical traditions informs this research. The pragmatism of symbolic interactionism and the critical theory of Habermas brought a broad orientation to the research. Integration of the theoretical framework and grounded-theory methods facilitated data generation and analysis of 29 interviews with patients, family carers, and healthcare professionals. The key analytical findings depict a scope of palliative care that was uncertain for users of the system and for those working within the system. Becoming "palliative" is not a defined event; nor is there unanimity around referral to a palliative care service. As such, ambiguity and tension contribute to the difficulties involved in negotiating the transition to palliative care. Our findings point to uncertainty around the scopes of practice in the transition to palliative care. The challenge in the transition process lies in achieving greater coherency of care within an increasingly specialized healthcare system. The findings may not only inform those within a metastatic melanoma context but may contribute more broadly to palliative practices within the acute care setting.
Mônica Estuque Garcia de Queiroz
Full Text Available According to the World Health Organization (WHO, palliative care can be defined as active and totalcare measures that improve the life quality of patients with terminal diseases and their family/relatives, throughprevention and suffering relieve by means of early identification, adequate evaluation, and treatment of painand other physical, psychosocial and spiritual problems. This article deals with the attention of the occupationaltherapist in palliative care, as from the definition of this philosophy and its principles. The occupational therapist’spractice is described through the author’s theoretical and practical references. In palliative care, occupationaltherapy helps the patient and caregiver to deal with the difficulties mentioned and observed in order to achievegreater comfort, dignity and quality of life in the hospital or at home, in order to promote the maximum levelof independence and/or occupational performance with autonomy with the aim to improve the quality of life,despite the functional loss, cognitive, emotional and social.
Lind, S; Wallin, L; Brytting, T; Fürst, C J; Sandberg, J
In high-income countries a large proportion of all deaths occur in hospitals. A common way to translate knowledge into clinical practice is developing guidelines for different levels of health care organisations. During 2012, national clinical guidelines for palliative care were published in Sweden. Later, guidance for palliative care was issued by the National Board of Health and Welfare. The aim of this study was two-fold: to investigate perceptions regarding these guidelines and identify obstacles and opportunities for implementation of them in acute care hospitals. Interviews were conducted with local politicians, chief medical officers and health professionals at acute care hospitals. The Consolidated Framework for Implementation Research was used in a directed content analysis approach. The results showed little knowledge of the two documents at all levels of the health care organisation. Palliative care was primarily described as end of life care and only few of the participants talked about the opportunity to integrate palliative care early in a disease trajectory. The environment and culture at hospitals, characterised by quick decisions and actions, were perceived as obstacles to implementation. Health professionals' expressed need for palliative care training is an opportunity for implementation of clinical guidelines. There is a need for further implementation of palliative care in hospitals. One option for further research is to evaluate implementation strategies tailored to acute care. Copyright © 2017 Elsevier B.V. All rights reserved.
Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and ...
Glare, Paul A; Auret, Kirsten A; Aggarwal, Ghauri; Clark, Katherine J; Pickstock, Sarah E; Lickiss, J Norelle
Palliative care teams have made an important contribution to improving the care of patients with incurable illnesses in Australian hospitals over the past 20 years. Co-location of hospital-based palliative medicine specialists with other specialties allows communication and exchange of ideas on issues relevant to the medical care of such patients. Shared management of complex cases maximises comprehension of patient distress and optimises the support provided during hospitalisation. Tensions arising across the interface provide opportunities for both groups to improve the relief of suffering in the acute-care setting. Palliative medicine in the private sector has some advantages, but specialists also face specific challenges, including the cost of certain drugs, access to the multidisciplinary team and reimbursement issues.
Frey, Rosemary; Gott, Merryn; Raphael, Deborah; O'Callaghan, Anne; Robinson, Jackie; Boyd, Michal; Laking, George; Manson, Leigh; Snow, Barry
Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. On average, the clinical staff rated the quality of care provided to people who die in the hospital as 'good' (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Berlin, Ana; Hwang, Franchesca; Singh, Ranbir; Pentakota, Sri Ram; Singh, Roshansa; Chernock, Brad; Mosenthal, Anne C
When patients with dementia develop acute surgical abdomen, patients, surrogates, and surgeons need accurate prognostic information to facilitate goal-concordant decision making. Palliative care can assist with communication, symptom management, and family and caregiver support in this population. We aimed to characterize outcomes and patterns of palliative care utilization among patients with dementia, presenting with abdominal surgical emergency. We retrospectively queried the National Inpatient Sample for patients aged >50 years with dementia and acute abdominal emergency who were admitted nonelectively 2009-2013, utilizing ICD-9-CM codes for dementia and surgical indication. We characterized outcomes and identified predictors of palliative care utilization. Among 15,209 patients, in-hospital mortality was 10.2%, the nonroutine discharge rate was 67.2%, and 7.5% received palliative care. Patients treated operatively were less likely to receive palliative care than those who did not undergo operation (adjusted OR = 0.50; 95% CI 0.41-0.62). Only 6.4% of patients discharged nonroutinely received palliative care. Patients with dementia and acute abdominal emergency have considerable in-hospital mortality, a high frequency of nonroutine discharge, and low palliative care utilization. In this group, we discovered a large gap in palliative care utilization, particularly among those treated operatively and those who are discharged nonroutinely. Copyright © 2017 Elsevier Inc. All rights reserved.
Pringle, Jan; Johnston, Bridget; Buchanan, Deans
A core concept behind patient-centred approaches is the need to treat people with, and preserve, dignity in care settings. People receiving palliative care are one group who may have particularly sensitive needs in terms of their condition, symptoms and life expectancy. Dignity is more likely to be violated in hospital settings. Given the high percentage of people with palliative care needs who are admitted to hospital during their last year of life, the provision of dignity enhancing and preserving care in that setting is of vital importance. To examine international evidence relating to dignity and person-centred care for people with palliative care needs in the acute hospital setting. A systematic literature review was conducted, incorporating data extraction, analysis and quality appraisal of included papers. MEDLINE, CINAHL, PsycINFO, ASSIA, EMBASE, Cochrane Database and Web of Science. Inclusion dates: 1 January 2000-1 April 2014. Adult palliative care, acute care setting, dignity or person-centred care. In all, 33 papers met the inclusion criteria for the review. Papers highlighted the many and varied potential threats to dignity for people with palliative care needs in acute settings, including symptom control and existential distress, approaches and models in care provision and healthcare settings and design. Acute hospital staff require adequate training, including symptom control, and the correct environment in which to deliver dignified and person-centred end-of-life care. Specific models/approaches to care can be beneficial, if adequate training regarding implementation is given. The needs of family members also require consideration, particularly following bereavement. © The Author(s) 2015.
Full Text Available Levofloxacin is a commonly prescribed antibiotic for managing chest and urinary tract infections in a palliative care setting. Incidence of Levofloxacin-associated anaphylaxis is rare and delirium secondary to Levofloxacin is a seldom occurrence with only few published case reports. It is an extremely rare occurrence to see this phenomenon in combination. Early identification and prompt intervention reduces both mortality and morbidity. A 17-year-old male with synovial sarcoma of right thigh with chest wall and lung metastasis and with no prior psychiatric morbidity presented to palliative medicine outpatient department with community-acquired pneumonia. He was initiated on intravenous (IV Ceftriaxone and IV Levofloxacin. Post IV Levofloxacin patient developed anaphylaxis and acute delirium necessitating IV Hydrocortisone, IV Chlorpheneramine, Oxygen and IV Haloperidol. Early detection and prompt intervention helped in complete recovery. Patient was discharged to hospice for respite after 2 days of hospitalization and then discharged home. Acute palliative care approach facilitated management of two life-threatening medical complications in a palliative care setting improving both quality and length of life.
Soares, Luiz Guilherme L; Japiassu, André M; Gomes, Lucia C; Pereira, Rogéria
Patients with complex palliative care needs can experience delayed discharge, which causes an inappropriate occupancy of hospital beds. Post-acute care facilities (PACFs) have emerged as an alternative discharge destination for some of these patients. The aim of this study was to investigate the frequency of admissions and characteristics of palliative care patients discharged from hospitals to a PACF. We conducted a retrospective analysis of PACF admissions between 2014 and 2016 that were linked to hospital discharge reports and electronic health records, to gather information about hospital-to-PACF transitions. In total, 205 consecutive patients were discharged from 6 different hospitals to our PACF. Palliative care patients were involved in 32% (n = 67) of these discharges. The most common conditions were terminal cancer (n = 42, 63%), advanced dementia (n = 17, 25%), and stroke (n = 5, 8%). During acute hospital stays, patients with cancer had significant shorter lengths of stay (13 vs 99 days, P = .004), a lower use of intensive care services (2% vs 64%, P care. Further studies are necessary to understand the trajectory of posthospitalized patients with life-limiting illnesses and what factors influence their decision to choose a PACF as a discharge destination and place of death. We advocate that palliative care should be integrated into the portfolio of post-acute services.
Full Text Available Introduction: The Ramsay Hunt syndrome is characterized by combination of herpes infection and lower motor neuron type of facial nerve palsy. The disease is caused by a reactivation of Varicella Zoster virus and can be unrepresentative since the herpetic lesions may not be always be present (zoster sine herpete and might mimic other severe neurological illnesses. Case Report: A 63-year-old man known case of carcinoma of gall bladder with liver metastases, post surgery and chemotherapy with no scope for further disease modifying treatment, was referred to palliative care unit for best supportive care. He was on regular analgesics and other supportive treatment. He presented to Palliative Medicine outpatient with 3 days history of ipsilateral facial pain of neuropathic character, otalgia, diffuse vesciculo-papular rash over ophthalmic and maxillary divisions of left trigeminal nerve distribution of face and ear, and was associated with secondary bacterial infection and unilateral facial edema. He was clinically diagnosed to have Herpes Zoster with superadded bacterial infection. He was treated with tablet Valacyclovir 500 mg four times a day, Acyclovir cream for local application, Acyclovir eye ointment for prophylactic treatment of Herpetic Keratitis, low dose of Prednisolone, oral Amoxicillin and Clindamycin for 7 days, and Pregabalin 150 mg per day. After 7 days of treatment, the rash and vesicles had completely resolved and good improvement of pain and other symptoms were noted. Conclusion: Management of acute infections and its associated complications in an acute palliative care setting improves both quality and length of life.
Full Text Available Abstract Background Continual collaboration between physicians and hospital-based palliative care teams represents a very important contributor to focusing on patients' symptoms and maintaining their quality of life during all stages of their illness. However, the traditionally late introduction of palliative care has caused misconceptions about hospital-based palliative care teams (PCTs among patients and general physicians in Japan. The objective of this study is to identify the factors related to physicians' attitudes toward continual collaboration with hospital-based PCTs. Methods This cross-sectional anonymous questionnaire-based survey was conducted to clarify physicians' attitudes toward continual collaboration with PCTs and to describe the factors that contribute to such attitudes. We surveyed 339 full-time physicians, including interns, employed in a general acute-care hospital in an urban area in Japan; the response rate was 53% (N = 155. We assessed the basic characteristics, experience, knowledge, and education of respondents. Multiple logistic regression analysis was used to determine the main factors affecting the physicians' attitudes toward PCTs. Results We found that the physicians who were aware of the World Health Organization (WHO analgesic ladder were 6.7 times (OR = 6.7, 95% CI = 1.98-25.79 more likely to want to treat and care for their patients in collaboration with the hospital-based PCTs than were those physicians without such awareness. Conclusion Basic knowledge of palliative care is important in promoting physicians' positive attitudes toward collaboration with hospital-based PCTs.
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.
O'Shea, Emma; Timmons, Suzanne; Kennelly, Sean; de Siún, Anna; Gallagher, Paul; O'Neill, Desmond
As the prevalence of dementia increases, more people will need dementia palliative and end-of-life (EOL) care in acute hospitals. Published literature suggests that good quality care is not always provided. To evaluate the prescription of antipsychotics and performance of multidisciplinary assessments relevant to palliative care for people with dementia, including those at EOL, during hospital admission. As part of a national audit of dementia care, 660 case notes were reviewed across 35 acute hospitals. In the entire cohort, many assessments essential to dementia palliative care were not performed. Of the total sample, 76 patients died, were documented to be receiving EOL care, and/or were referred for specialist palliative care. In this cohort, even less symptom assessment was performed (eg, no pain assessment in 27%, no delirium screening in 68%, and no mood or behavioral and psychological symptoms of dementia in 93%). In all, 37% had antipsychotic drugs during their admission and 71% of these received a new prescription in hospital, most commonly for "agitation." This study suggests a picture of poor symptom assessment and possible inappropriate prescription of antipsychotic medication, including at EOL, hindering the planning and delivery of effective dementia palliative care in acute hospitals. © The Author(s) 2015.
Aquilina, Francesca Falzon; Agius, Mark
The Dementias are common neurodegenerative diseases which gradually deteriorate and eventually become fatal. However, hospice care is usually made available to patients suffering from Cancer, while patients who suffer from other chronic conditions such as dementia are not usually offered such care. However the lessons which have been learnt regarding hospice palliative care could be applied with some modification to the care of patients with Dementia. This article attempts to discuss the present literature about palliative care in Dementia, in order to clarify the evidence which underlies the European Association for Palliative Care 'White paper defining optimal palliative care in older people with dementia'.
Bryson, John; Coe, Gary; Swami, Nadia; Murphy-Kane, Patricia; Seccareccia, Dori; Le, Lisa W; Rodin, Gary; Zimmermann, Camilla
We examined administrative outcomes after opening an oncology acute palliative care unit (APCU), to determine attainment of administrative targets related to the unit's function of acute palliation. We retrospectively reviewed the administrative database for our APCU for the 5 years following its opening in 2003. Data were abstracted on demographic information, as well as source of admission, primary reason for admission, discharge destination, inpatient death rate, and length of stay. Linear regression and the Cochran-Armitage trend test were used for analysis. In keeping with targets set at the unit's opening, our primary hypotheses were that outpatient admissions, admissions for symptom control, and discharges home would increase over the study period; secondary hypotheses were that length of stay and inpatient death rate would decrease. There were 1748 admissions during the study period: the median age was 64, 54% were women, and the most common cancer sites were gastrointestinal (24%), lung (20%), and gynecologic (13%). There were significant changes for all primary endpoints: outpatient admissions increased from 47% to 70% (p administrative targets for an APCU is possible with appropriate admission criteria, adequate community resources, and education of patients, families and health professionals regarding the model of care.
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027
Gherman, Liliana; Pogonet, Vadim; Soltan, Viorel; Isac, Valerian
The article describes the important steps of palliative care development in Moldova, the current status, main achievements and challenges to be addressed in the future. It covers background information, policy development, medicines access and availability, education, and training, as well as services' provision. Palliative care development in Moldova registered real progress in spite of frequent political changes at governmental levels and difficulties to ensure the continuity of the development process during the last 10 years. However, the unmet need for palliative care for patients with life-limiting illnesses from different disease and age groups remains high. Further effort is needed to increase the availability and access to opioid analgesics and other essential palliative care medications. Government commitment and support, together with adequate funding, trained and educated health care professionals, and easy access to and availability of medicines, are essential to ensure the successful implementation of palliative care services nationwide, and to deliver the most appropriate qualitative palliative care for patients. To speed up palliative care development, a national strategy on palliative care development should be considered. The authors took part and continue to be involved in different ways in palliative care development in the country. Copyright © 2017. Published by Elsevier Inc.
... Care Tips - español (Spanish) PDF National Institute of Nursing Research Pediatric Palliative Care at a Glance - English PDF ... a Glance - español (Spanish) PDF National Institute of Nursing Research Palliative Care for Children: Support for the Whole ...
death, with close collaboration between acute and palliative physicians.This model of care should be encouraged ... productivity and death. BIOMEDICAL MARKERS DETER-. MINING THE TERMINAL PHASE .... nursing component of the multi- disciplinary team should facilitate strong liaison between the spe- cialised ...
Dementia is a highly prevalent, progressive, life-limiting illness for which there is no cure. Palliative care is a specialized area of healthcare that focuses on improving the quality of life for individuals with life-limiting diseases. Symptoms such as disorientation, tension, and anxiety occur in patients with dementia at moderate to severe levels as they approach the end of their lives, as well as other common symptoms found with cancer patients, yet the dementia population continues to be unrecognized for their need for palliative care. This article examines current literature with respect to palliative care for patients with dementia.
de la Cruz, Maxine; Yennu, Sriram; Liu, Diane; Wu, Jimin; Reddy, Akhila; Bruera, Eduardo
Delirium is the most common neuropsychiatric condition in very ill patients and those at the end of life. Previous case reports found that delirium-induced disinhibition may lead to overexpression of symptoms. It negatively affects communication between patients, family members, and the medical team and can sometimes lead to inappropriate interventions. Better understanding would result in improved care. Our aim was to determine the effect of delirium on the reporting of symptom severity in patients with advanced cancer. We reviewed 329 consecutive patients admitted to the acute palliative care unit (APCU) without a diagnosis of delirium from January to December 2011. Demographics, Memorial Delirium Assessment Scale, Eastern Cooperative Oncology Group (ECOG) Performance status, and Edmonton Symptom Assessment Scale (ESAS) on two time points were collected. The first time point was on admission and the second time point for group A was day one (+two days) of delirium. For group B, the second time point was within two to four days before discharge from the APCU. Patients who developed delirium and those who did not develop delirium during the entire course of admission were compared using chi-squared test and Wilcoxon rank-sum test. Paired t-test was used to assess if the change of ESAS from baseline to follow-up was associated with delirium. Ninety-six of 329 (29%) patients developed delirium during their admission to the APCU. The median time to delirium was two days. There was no difference in the length of stay in the APCU for both groups. Patients who did not have delirium expressed improvement in all their symptoms, while those who developed delirium during hospitalization showed no improvement in physical symptoms and worsening in depression, anxiety, appetite, and well-being. Patients with delirium reported no improvement or worsening symptoms compared to patients without delirium. Screening for delirium is important in patients who continue to report
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.
Grønvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang
Aims: The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population: The study population is all...... patients in Denmark referred to and/or in contact with SPC after January 1, 2010. Main variables: The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference...... patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion: DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness....
Wittenberg-Lyles, Elaine; Goldsmith, Joy; Platt, Christine Small
To summarize the challenges of teaching, practicing, and learning palliative care communication and offer resources for improving skills and educating others. A theoretically grounded, evidence-based communication curriculum called COMFORT (Communication, Orientation and opportunity, Mindful presence, Family, Openings, Relating, and Team). The COMFORT curriculum is available for free through a Web site, a smartphone/iPad application, and online for continuing education units. The COMFORT curriculum provides resources to support the expansion and inclusion of palliative care practice not only in oncology, but also in a wide variety of disease contexts.
Khan, Robyna Irshad
Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.
Full Text Available Critical junctures in patients′ lives such as chronic illnesses and advanced diseases may leave the persons in a state of imbalance or disharmony of body, mind and spirit. With regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness. Empirical evidence suggests that spiritual support may act as an adjunct to the palliative care of those facing advanced diseases and end of life. In this article, the author draws from his empirical work on spirituality and culture to develop a discourse on palliative care and spirituality in both secular and non-secular settings. In doing so, this paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence. Responding to spiritual needs could be challenging, but at the same time it could be rewarding to both healthcare practitioner (HCP and patient in that they may experience spiritual growth and development. Patients may derive great health benefits with improvements in their quality of life, resolutions and meaning and purpose in life. It is hoped that the strategies for spiritual support outlined in this paper serve as practical guidelines to HCPs for development of palliative care in South Asia.
Madsen, Kirsten Halskov; Henriksen, Jette; Meldgaard, Anette
-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......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...... 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....
Mukambetov, Aibek; Sabyrbekova, Taalaigul; Asanalieva, Lola; Sadykov, Ilim; Connor, Stephen R
Palliative care began in Kyrgyzstan in 2005 as a pilot home-based care program in Osh Cancer Center and was supported by a small group of nurses and one physician from Scotland. In 2010, the Soros Foundation-Kyrgyzstan and the Open Society Foundation's International Palliative Care Initiative began supporting work on palliative care policy, legislation, essential medicine availability, education, advocacy, and implementation. A Ministry of Health working group was established to lead this initiative, and technical assistance was provided by an international palliative care consultant. Work began with a national needs assessment, which identified the existing barriers to the provision of quality palliative care, and recommendations were made to the working group to address these challenges. Today, palliative care is included in many national health care policies and laws, a national palliative care association has been established, undergraduate medical and nursing education include elements of palliative care, oral morphine and fentanyl patches are now available in parts of the country, inpatient services exist in the National Cancer Center in Osh and Bishkek, two tuberculosis hospitals with multidrug resistant/extensively drug resistant, and home care services in Osh and Bishkek. Public information campaigns and advocacy activities continue to increase public awareness about palliative care and press government action. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Stewart, Jonathan T; Schultz, Susan K
With the growing care needs for the older population at the end of their lives, there has been a substantial increase in attention to the management of the patient with dementia in hospice and palliative care services. This article reviews issues in access to care and the optimal management of the patient with dementia, particularly in the context of neuropsychiatric complexities. Special issues such as delirium, cachexia, behavioral symptoms, and pain management are addressed. Future challenges in research such as the development of better prognostic models are noted as well as the importance of attention to access to care. Published by Elsevier Inc.
® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...
To describe palliative care as part of comprehensive oncology nursing care. A review of the palliative care, oncology, and nursing literature over the past 10 years. Palliative care is mandated as part of comprehensive cancer care. A cancer diagnosis often results in distress in the physical, psychosocial, spiritual, and emotional domains of care. Oncology nurses are essential in providing palliative care from diagnosis to death to patients with cancer. They address the myriad aspects of cancer. With palliative care skills and knowledge, oncology nurses can provide quality cancer care. There are many opportunities in which oncology nurses can promote palliative care. Oncology nurses must obtain knowledge and skills in primary palliative care to provide comprehensive cancer care. Copyright © 2015 Elsevier Inc. All rights reserved.
Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J
Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.
Bergenholtz, Heidi; Jarlbæk, Lene; Hølge-Hazelton, Bibi
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......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...
Full Text Available ... The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category ... Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,364 views 3:29 Perinatal Palliative Care - ...
Mercadante, Sebastiano; Prestia, Giovanna; Casuccio, Alessandra
To assess the nurses' performance in assessing, treating, and documenting breakthrough pain (BTP) in a palliative care unit where traditionally there is continuous training. The study was performed in an acute palliative care unit. Once a week, a research nurse examined the documentation regarding all the episodes of BTP registered in a specific pain chart, designed by the institutional nurse board, as part of the routine nurse activity. The charts of 50 consecutive eligible patients (32 M/18 F), were analysed. The mean number of episodes/patient was 3.3 (SD 1.61; range 1-7). 166 episodes occurred. The main BTP pain intensity was 7.06 (SD 0.82). In 7 episodes, pain intensity was not evaluated at T0. The pain intensity after 15 minutes after BTP medication was 3.01 (SD1.19). In 28 episodes, pain intensity was not evaluated at T15. The change in pain intensity was highly significant (P nurse diary. Training in a research environment allows a good nurse capability in evaluating and treating BTP, and above all, providing documentation for each BTP episode. The theoretical work and recommendations around BTP need to be translated into day-to-day clinical practice.
Pautex, S; Toni, V; Bossert, P; Hilleret, H; Ducloux, D; Forestier, J; Cabotte, E; Philippin, Y; Guisado, H; Vogt-Ferrier, N
In palliative care, the intensity and duration of anxiety as well as its consequences on the patient's daily activities can significantly decrease his quality of life. Anxiety that does not incapacitate the patient to the point of his being unable to communicate or perform his usual activities does not necessarily require drug treatment. The non pharmacological treatments of anxiety are presented in some detail. Prescription of anxiolytic drugs in renal or hepatic failure, as well as when oral intake or venous access are difficult, is briefly discussed.
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.
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)
de la Cruz, Maxine; Ransing, Viraj; Yennu, Sriram; Wu, Jimin; Liu, Diane; Reddy, Akhila; Delgado-Guay, Marvin; Bruera, Eduardo
Delirium is a common neuropsychiatric condition seen in patients with severe illness, such as advanced cancer. Few published studies are available of the frequency, course, and outcomes of standardized management of delirium in advanced cancer patients admitted to acute palliative care unit (APCU). In this study, we examined the frequency, characteristics, and outcomes of delirium in patients with advanced cancer admitted to an APCU. Medical records of 609 consecutive patients admitted to the APCU from January 2011 through December 2011 were reviewed. Data on patients' demographics; Memorial Delirium Assessment Scale (MDAS) score; palliative care specialist (PCS) diagnosis of delirium; delirium etiology, subtype, and reversibility; late development of delirium; and discharge outcome were collected. Delirium was diagnosed with MDAS score ≥7 and by a PCS using Diagnostic and Statistical Manual, 4th edition, Text Revision criteria. All patients admitted to the APCU received standardized assessments and management of delirium per best practice guidelines in delirium management. Of 556 patients in the APCU, 323 (58%) had a diagnosis of delirium. Of these, 229 (71%) had a delirium diagnosis on admission and 94 (29%) developed delirium after admission to the APCU. Delirium reversed in 85 of 323 episodes (26%). Half of patients with delirium (n = 162) died. Patients with the diagnosis of delirium had a lower median overall survival than those without delirium. Patients who developed delirium after admission to the APCU had poorer survival (p ≤ .0001) and a lower rate of delirium reversal (p = .03) compared with those admitted with delirium. More than half of the patients admitted to the APCU had delirium. Reversibility occurred in almost one-third of cases. Diagnosis of delirium was associated with poorer survival. ©AlphaMed Press.
"Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts.
Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory
Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.
Knight, Carl; Albertsen, Andreas
Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare....... We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable...... to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive....
Karlin, Daniel; Phung, Peter; Pietras, Christopher
Patients with gynecologic malignancies face many difficult issues in the course of their diseases, ranging from physical symptoms to advance care planning in light of a poor prognosis. This review examines the evidence supporting integration of palliative care early in the course of disease and symptom management, and provides a framework for difficult conversations. Palliative care has been demonstrated to improve quality of life and promote survival if integrated early in the course of disease. An evidence-based approach should guide symptom management, such as pain and nausea. Advance care planning and goals of care discussions are enhanced by a framework guiding discussion and the incorporation of empathetic responses. Palliative care is a diverse multidisciplinary field that can provide significant benefit for patients with gynecologic malignancies.
Mercadante, Sebastiano; Porzio, Giampiero; Caruselli, Amanda; Aielli, Federica; Adile, Claudio; Girelli, Nicola; Casuccio, Alessandra
Cancer patients with a history of alcoholism may be problematic. The frequency of alcoholism among patients with advanced cancer has never been reported in Italy or other European countries. The aim of this prospective study was to determine the frequency of alcoholism, assessed with a simple and validated instrument, among patients with advanced cancer who were referred to two different palliative care settings: an acute inpatient palliative care unit (PCU) of a comprehensive cancer center in a metropolitan area and a home care program (HCP) in a territorial district, localized in the mountains of Italy. A consecutive sample of patients admitted to an inpatient PCU and to an HCP was assessed for a period of eight months. Each patient who agreed to be interviewed completed the Cut down, Annoyed, Guilty, Eye-opener (CAGE) questionnaire. Patients were then interviewed informally to gather information about their history with alcohol. In total, 443 consecutive patients were surveyed; data from 249 to 194 patients were collected in the PCU and HCP, respectively, in the eight-month period. The mean age was 66.4 (SD 12.7) years, and 207 were males. The mean Karnofsky level was 54.2 (SD 14.6). Eighteen patients were CAGE positive (4.06%). Males (Pearson Chi-squared, P = 0.027) and younger patients (analysis of variance test, P = 0.009) were more likely to be CAGE positive. Informal interviews revealed that 17 patients (3.83%) were alcoholics or had a history of alcoholism, and that alcoholism was strongly correlated with CAGE (Pearson Chi-squared, P alcoholism. As CAGE patients express more symptom distress, it is important to detect this problem with a simple tool that has a high sensitivity and specificity and is easy to use even in patients with advanced disease. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Karlen, Naomi; Cruz, Brian; Leigh, A E
Despite the growth of palliative medicine, 39% of hospitals do not have palliative care teams for consultation or to provide resident education. We examined the impact of resident-led education in palliative care principles on attitudes toward and comfort with palliative medicine and end-of-life care among internal medicine residents. An educational module designed by the authors was presented to other internal medicine residents in the program. Pre- and post-intervention survey data measuring residents' agreement with various statements regarding palliative medicine and end-of-life care were analyzed. Residents' agreement with various statements regarding palliative medicine and end-of-life care on a 5-point Likert scale was analyzed. Following the intervention, participants reported improved comfort with general knowledge of palliative medicine (p palliative care and end-of-life care (p curriculum in palliative medicine can improve resident comfort within this still-under-represented area of medicine.
Mercadante, Sebastiano; Adile, Claudio; Ferrera, Patrizia; Cortegiani, Andrea; Casuccio, Alessandra
Delirium is often unrecognized in cancer patients. The aim of this study was to investigate the prevalence of delirium assessed by the Memorial Delirium Assessment Scale (MDAS) and possible associated factors on admission to an acute palliative/supportive care unit (APSCU). The secondary outcome was to assess changes in MDAS and symptom burden at time of discharge. A consecutive sample of advanced cancer patients who were admitted to an APSCU was prospectively assessed for a period of 10 months. Patient demographics, including age, gender, primary diagnosis, Karnofsky status, stage of disease, and educational level were collected. The Edmonton Symptom Assessment Scale (ESAS) and the MDAS were measured at hospital admission and discharge. A total of 314 patients were surveyed. Of 292 patients with MDAS available at T0, 74 (25.3%) and 24 (8.2%) had a MDAS of 7-12 and ≥13, respectively. At discharge, there was a significant decrease in the number of patients with a MDAS ≥7/30. Higher values of MDAS were associated with age (p = .028), a lower Karnofsky status (p symptoms (p = .026), hospital stay (p = .038) and death (p Delirium is highly prevalent in patients admitted to APSCU, characterized by a low mortality due to early referral. Comprehensive assessment and treatment may allow a decrease in the level of cognitive disorders and symptom burden.
Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth
Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. Copyright © 2014 Elsevier Inc. All rights reserved.
Mrs Tanchel co-super- vises final-year social work students at the. University of Cape. Town. She is active in education both for professionals (includ- ing medical students, doctors and nurses) and lay persons. She has worked in palliative care for more than 15 years and has had 25 years' experience in psychosocial care.
Venkatasalu, Munikumar Ramasamy; Clarke, Amanda; Atkinson, Joanne
To explore and critically examine stakeholders' views and perceptions concerning the nurse-led Palliative Care Discharge Service in an acute hospital setting and to inform sustainability, service development and future service configuration. The drive in policy and practice is to enable individuals to achieve their preferred place of care during their last days of life. However, most people in UK die in acute hospital settings against their wishes. To facilitate individuals' preferred place of care, a large acute hospital in northeast England implemented a pilot project to establish a nurse-led Macmillan Palliative Care Discharge Facilitator Service. A pluralistic evaluation design using qualitative methods was used to seek stakeholders' views and perceptions of this service. In total, 12 participants (five bereaved carers and seven health professionals) participated in the evaluation. Semi-structured interviews were conducted with bereaved carers who used this service for their relatives. A focus group and an individual interview were undertaken with health professionals who had used the service since its inception. Individual interviews were also conducted with the Discharge Facilitator and service manager. Analysis of all data was guided by Framework Analysis. Four key themes emerged relating to the role of the Discharge Facilitator Service: achieving preferred place of care; the Discharge Facilitator as the 'conduit' between hospital and community settings; delays in hospital discharge and stakeholders' perceptions of the way forward for the service. The Discharge Facilitator Service acted as a reliable resource and support for facilitating the fast-tracking of end-of-life patients to their preferred place of care. Future planning for hospital-based palliative care discharge facilitating services need to consider incorporating strategies that include: increased profile of the service, expansion of service provision and the Discharge Facilitator's earlier
Full Text Available ... it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...
Conclusions: Prevalence of hyponatremia is significant in palliative care patients. A prospective study looking at the causes and clinical outcomes associated with hyponatremia in palliative care patients is needed.
Full Text Available ... The Keeney Family discuss pediatric palliative care - Duration: 12:07. Hospice of the Western Reserve 11,132 views 12:07 Perinatal Palliative Care - The Zimmer Family Story - ...
Full Text Available ... and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 26,045 views 5:39 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: ...
Full Text Available ... Cancer Society 4,275 views 3:29 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: 10:35. Little Stars 12,275 views 10:35 Pediatric Palliative Care ...
Full Text Available ... views 4:24 Perinatal Palliative Care - The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 193,342 views 13:34 LIFE Before Death Pediatric Palliative Care - Duration: 5:27. ...
Full Text Available ... count__/__total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...
Morrison, R. Sean
Objective: To identify barrier to achieving universal access to high quality palliative care in Canada, review published national strategies and frameworks to promote palliative care, examine key aspects that have been linked to successful outcomes, and make recommendations for Canada.
Ivanyushkin, A Y; Khetagurova, A K
The article addresses the history of establishing hospices in Russia complying with international WHO documents. The article also presents the ethics of palliative medicine in the Russian Federation with an objective analysis of the diseases affecting patients with special highlights on social problems.
Lopez-Tourres, F; Lefebvre-Chapiro, S; Fétéanu, D; Trivalle, C
Although end-of-life care is a relatively common option for patients with terminal cancer, it has become available only recently for patients with Alzheimer's disease. Alzheimer's disease is a chronic process of gradual deterioration of cognitive ability and the resulting deficits in activities of daily living. The chronic disease course of Alzheimer's disease gives to the clinician the opportunity to look ahead and plan for the final stages of care. This article presents a review of palliative care interventions for patients with Alzheimer's disease and other dementias. End-of-life care for individuals with end-stage Alzheimer's disease is increasingly important because of the increasing number of patients with this disease. However, there are barriers to providing high-quality end-of-life care. Currently, palliative care is not optimal for Alzheimer's patients. Health care systems and clinicians should make efforts to improve the suffering of patients with this disease and their caregivers.
enrolled on its programme, due to pain. Palliative care across Sub-Saharan Africa is still in its infancy and invariably practised in resource limited settings. Accordingly effective medical treatment has to take account of factors not faced in the rich, more highly developed regions of the world. For example nsima readily blocks ...
de Visser, Marianne; Oliver, David J.
Purpose of review Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating
The orientation of life before death towards a quality as high as possible leads to an understanding of palliative medicine not as a pure medical discipline but rather as an integral approach of different disciplines, professions and services, combining several sectors and not being restricted to professionals. Within this change of patterns the pastoral care contribution is developed from professional clinical pastoral care, at first the pastoral care attitude in palliative medicine, challenged by the irritating expectation which dying and death every time demands of all involved. Basics of general mourning research and tasks of bereavement counselling are explained for elaboration as well as theological basics of a Christian human dignity concept. Different competence areas of pastoral care are linked to the dimensions of myth, ethos and rite. Finally a couple of tasks and challenges concerning interreligious cooperation, the cooperating with relatives and volunteers as well as structural questions of pastoral care are mentioned.
Blacquiere, Dylan; Bhimji, Khadija; Meggison, Hilary; Sinclair, John; Sharma, Michael
The determinants of satisfaction for families of acute stroke patients receiving palliative care have not been extensively studied. We surveyed families to determine how they perceived palliative care after stroke. Families of patients palliated after ischemic stroke, intracerebral, or subarachnoid hemorrhage were approached. Four weeks after the patient's death, families were administered the After-Death Bereaved Family Member Interview to determine satisfaction with the care provided. Fifteen families participated. Families were most satisfied with participation in decision making and least satisfied with attention to emotional needs. In stroke-specific domains, families had less satisfaction with artificial feeding, hydration, and communication. Overall satisfaction was high (9.04 out of 10). Families of patients receiving palliative care at our institution showed generally high satisfaction with palliation after stroke; specific domains were identified for improvement. Further study in larger populations is required.
Best, Megan; Butow, Phyllis; Olver, Ian
A previous survey of the Multinational Association of Supportive Care in Cancer (MASCC) members found low frequency of spiritual care provision. We hypothesized that physicians with special training in palliative medicine would demonstrate an increased sense of responsibility for and higher self-reported adequacy to provide spiritual care to patients than health professionals with general training. We surveyed members of the Australian and New Zealand Palliative Medicine Society (ANZSPM) to ascertain their spiritual care practices. We sent 445 e-mails on four occasions, inviting members to complete the online survey. Tabulated results were analyzed to describe the results. One hundred and fifty-eight members (35.5 %) responded. Physicians working primarily in palliative care comprised the majority (95 %) of the sample. Significantly more of the ANZSPM than MASCC respondents had previously received training in spiritual care and had pursued training in the previous 2 years. There was a significant difference between the two groups with regard to interest in and self-reported ability to provide spiritual care. Those who believed it was their responsibility to provide spiritual care were more likely to have had training, feel they could adequately provide spiritual care, and were more likely to refer patients if they could not provide spiritual care themselves. Training in spiritual care was more common in healthcare workers who had received training in palliative care. ANZSPM members gave higher scores for both the importance of spiritual care and self-reported ability to provide it compared to MASCC members.
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.
Dementia is a life-limiting disease without curative treatments but the data suggest that advanced dementia is not viewed as a terminal diagnosis by physicians. Although symptoms of dementia and cancer patients are similar, palliative care is less frequently proposed for dementia patients. However, professionals and family members of demented patients strongly favor comfort care for end-stage dementia. To improve the patients' relief near the end of life, advance care planning with patients and their proxies should be encouraged. It should start as soon as possible so that the patient can still be actively involved and his preferences, values, needs and beliefs elicited. Written advance directives or enrollment in hospice care are associated with quality of dying. Yet caregivers are sometimes concerned about applying palliative care too early or that advance plans would be invalidated if relatives or patients changed their mind. Therefore, general practitioners and palliative care specialists need to better collaborate to provide greater information and improve comfort and quality of life of dementia patients.
Mercadante, Sebastiano; Adile, Claudio; Ferrera, Patrizia; Casuccio, Alessandra
The aim of this prospective study was to determine the characteristics and symptom burden of advanced cancer patients with alcoholism problems and smoking, who were referred to an acute palliative/supportive care unit (ASPCU) of a comprehensive cancer center. Patients' characteristics, indications for admission, kind of admission, awareness of prognosis, and anticancer treatments were recorded. The Edmonton Symptom Assessment Scale (ESAS) was used to assess physical and psychological symptoms, and the CAGE questionnaire for the diagnosis of alcoholism. Patients were also divided in three groups: persistent smokers (PS), former smokers (FS), and non-smokers (NS). The Memorial Delirium Assessment Scale (MDAS) was used to assess the cognitive status of patients. Analgesic drugs and their doses at admission and discharge were recorded, as well opioid escalation index during hospital stay. Three hundred fourteen consecutive cancer patients were surveyed. Forty-seven (14.9%), 143 (45.5%), and 124 (39.5%) subjects were PS-patients, FS-patients, and NS-patients, respectively. Sixteen patients were CAGE-positive. Females were more frequently NS, while males were more frequently FS (p = 0.0005). Statistical differences were also observed in disease awareness among the categories of smoking (p = 0.048). No statistical differences were found in ESAS items, except for drowsiness at T0 in NS-patients. Differences were found in OME and OEI, although the large variability of data did not determined a statistical difference. Higher values of nausea (at T0, p = 0.0005), dyspnea (at T0 and TX, p = 0.08 and 0.023, respectively), and well-being (at TX p = 0.003) were reported in CAGE-positive patients. No correlation was found between CAGE-positive patients and smokers. Although smoking and alcoholism have obvious implications in advanced cancer patients, data remain controversial, as present data did provide limited data to confirm risk factors for advanced cancer patients
Full Text Available Background. Palliative care in Slovene health care system isn’t developed. Comparison with other countries is not possible in many aspects. There is no complete or appropriately educated palliative care team in hospitals or in primary care. Palliative care departments in hospitals and nursing homes do not exist. Holistic palliative home care is offered only by Slovene association of hospice. The pressure on nursing homes and nursing service departments is getting stronger. Standards and norms for staff, for living conditions and medical equipment do not allow any more admittances of patients with the needs of high category of care in these institutions.Conclusions. Indirect indicators of level of palliative care (e.g. morphine consumption, palliative care departments, home care network, undergraduate education, specialisation and research put Slovenia at the bade of the Europe. Statistics predict aging of population and more patients are also living with consequences of progressive chronic diseases and cancer.In the new healthcare reform there is an opportunity for palliative care to get an equal place in healthcare system. With coordinated implementation of palliative care departments, consultant teams and mobile specialistic teams, palliative care could reach a better level of quality. At the same time, quality permanent education is essential.
Selwyn, Peter A
As a physician working in palliative care, the author is often privileged to share special moments with patients and their families at the end of life. This haiku poem recalls one such moment in that precious space between life and death, as an elderly woman, surrounded by her adult daughters, takes her last breath. (PsycINFO Database Record (c) 2016 APA, all rights reserved).
Nambayan, Ayda Gan
Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a curriculum and distance learning developer for www.Cure4Kids.org, the educational website of the International Outreach Program of St. Jude Children's Research Hospital in Memphis, TN. In 2002, she retired from a faculty position from the University of...
Ismaile, Samantha; Alshehri, Hanan H; Househ, Mowafa
The aim of this study was to evaluate nursing undergraduate students' knowledge with regard to palliative care in Saudi Arabia. A quantitative descriptive research study was conducted by the use of validated tool. A total of 204 students were included in the study. There is little evidence in Saudi Arabia to demonstrate if nursing undergraduates receives education on palliative care. The results indicate that 57.9% of the nursing undergraduates had received educational sessions and 42.1% of nursing undergraduates did not. In conclusion, palliative care nursing education is crucial to improve quality of patient care in nursing practices. It is recommended that a palliative care education should be integrated within the nursing programme courses. Hence, in order to improve students' knowledge of palliative care, course content should cover the principles of palliative care as a part of any nursing bachelor programme.
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.
John Y Rhee
Funding: Arnhold Institute of Global Health at the Icahn School of Medicine at Mount Sinai, the African Palliative Care Association, the International Association for Hospice and Palliative Care, and the Institute for Culture and Society at the University of Navarra.
Ikushima, Hitoshi; Nishitani, Hiromu
Radiation therapy is a valuable treatment for palliation of local symptoms with consistently high response rates in the relief and control of bone pain, neurological symptom, obstructive symptoms, and tumor hemorrhage. Over than 80% of patients who developed bone metastasis and superior vena cava syndrome obtained symptom relief by radiation therapy. Radiation therapy is also well established as an effective treatment for brain metastasis, improving symptoms and preventing progressive neurological deficits, and recently stereotactic irradiation had became a alternative treatment of surgery for small metastatic brain tumors. Both radiation therapy and surgery are effective in the initial treatment of malignant spinal cord compression syndrome, and no advantages of surgery over radiation therapy has been demonstrated in published series when patients have a previously conformed diagnosis of malignant disease and no evidence of vertebral collapse. The outcome of treatment depends primarily upon the speed of diagnosis and neurological status at initiation of treatment. It is very important to start radiation therapy before patient become non-ambulant. Low irradiation dose and short treatment period of palliative radiation therapy can minimize disruption and acute morbidity for the patients with advanced cancer with enabling control of symptoms and palliative radiation therapy is applicable to the patient even in poor general condition. (author)
... Answers Palliative Care Questions and Answers Question Palliative Care Hospice Care Who can receive this care? Anyone with a ... a package deal? No, there is no ‘palliative care’ benefit package Yes, hospice is a comprehensive benefit covered by Medicare and ...
Mahmut Yaşar Çeliker
Full Text Available Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives.
Çeliker, Mahmut Yaşar; Pagnarith, Yos; Akao, Kazumi; Sophearin, Dim; Sorn, Sokchea
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives. PMID:28804708
Mun, Eluned; Umbarger, Lillian; Ceria-Ulep, Clementina; Nakatsuka, Craig
Palliative Care Teams have been shown to be instrumental in the early identification of multiple aspects of advanced care planning. Despite an increased number of services to meet the rising consultation demand, it is conceivable that the numbers of palliative care consultations generated from an ICU alone could become overwhelming for an existing palliative care team. Improve end-of-life care in the ICU by incorporating basic palliative care processes into the daily routine ICU workflow, thereby reserving the palliative care team for refractory situations. A structured, palliative care, quality-improvement program was implemented and evaluated in the ICU at Kaiser Permanente Medical Center in Hawaii. This included selecting trigger criteria, a care model, forming guidelines, and developing evaluation criteria. These included the early identification of the multiple features of advanced care planning, numbers of proactive ICU and palliative care family meetings, and changes in code status and treatment upon completion of either meeting. Early identification of Goals-of-Care, advance directives, and code status by the ICU staff led to a proactive ICU family meeting with resultant increases in changes in code status and treatment. The numbers of palliative care consultations also rose, but not significantly. Palliative care processes could be incorporated into a daily ICU workflow allowing for integration of aspects of advanced care planning to be identified in a systematic and proactive manner. This reserved the palliative care team for situations when palliative care efforts performed by the ICU staff were ineffective.
Cristina Anca COLIBABA
Full Text Available This article outlines learners’ difficulty in acquiring and practicing palliative medical skills necessary in medical procedures due to limited technologically state-of-the art language learning support to facilitate optimum access for medical students to the European medicine sector and offers as a potential solution the Palliative Care MOOC project (2014-1-RO01-KA203-002940. The project is co-financed by the European Union under the Erasmus+ program and coordinated by the Gr.T.Popa University of Medicine and Pharmacy Iasi, Romania. The article describes the project idea and main objectives, highlighting its focus and activities on developing innovative guidelines on standardized fundamental medical procedures, as well as clinical language and communication skills. The project thus helps not only medical lecturers and language teachers who teach medical students, but also the medical students themselves and the lay people involved in causalities.
To review important issues that address respect for patient autonomy, beneficnce, non-maleficence, and justice, which are included in communication surrounding the determination of decision-making capacity, informed consent, breaking bad news, and creating shared goals of care. Review articles, and government and organizational reports. Palliative care and its proximity to end-of-life care issues frequently raises ethical issues for patients, their families, and the clinicians caring for them. Supporting the identification and honoring the patient's preferences for treatment are central components of ethical behavior. Advance care planning provides an important opportunity for respecting patient autonomy and may be helpful when discussing care options surrounding resuscitation, withholding or withdrawal of treatment, or the determination of medical futility.
Temkin-Greener, Helena; Ladwig, Susan; Caprio, Tom; Norton, Sally; Quill, Timothy; Olsan, Tobie; Cai, Xueya; Mukamel, Dana B
Lack of nursing home (NH)-specific palliative care practice guidelines has been identified as a barrier to improving palliative and end-of-life (EOL) quality of care. The objectives of this study were to (1) assess which of the guidelines developed by the National Consensus Project, and the corresponding preferred care practices endorsed by the National Quality Forum, are important and feasible to implement in NHs; and (2) identify the operational standards for palliative care teams in NHs. Two-round mail Delphi study. Based on the existing literature, a set of 7 domains with associated 22 palliative practice guidelines was drafted. We invited 48 NH leaders, including clinicians, to review the importance (10-point Likert scale) and the feasibility (5-point Likert scale) of these guidelines. Participants were also asked about palliative care team composition rounding frequency. The response rate to both rounds was 85%. With regard to importance, the mean rating for all guidelines was 8 or higher (ie, highly important), but there was variability in agreement with regard to 5 of the guidelines. The same 5 guidelines were also considered more difficult to implement (eg, costly, unrealistic). Overall, 17 palliative care guidelines were identified for use by NH palliative care teams. Five disciplines (social work, certified nurse assistant, nurse, physician, and nurse practitioner or physician assistant) were identified as comprising a core team and 3 were proposed as extended or ad hoc members. The palliative care guidelines and team standards identified in this study may be helpful in providing practical direction to NH administrators and staff looking to improve palliative care practice for their residents. Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
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.
Brian S. Carter
Full Text Available The application of palliative and hospice care to newborns in the neonatal intensive care unit (NICU has been evident for over 30 years. This article addresses the history, current considerations, and anticipated future needs for palliative and hospice care in the NICU, and is based on recent literature review. Neonatologists have long managed the entirety of many newborns’ short lives, given the relatively high mortality rates associated with prematurity and birth defects, but their ability or willingness to comprehensively address of the continuum of interdisciplinary palliative, end of life, and bereavement care has varied widely. While neonatology service capacity has grown worldwide during this time, so has attention to pediatric palliative care generally, and neonatal-perinatal palliative care specifically. Improvements have occurred in family-centered care, communication, pain assessment and management, and bereavement. There remains a need to integrate palliative care with intensive care rather than await its application solely at the terminal phase of a young infant’s life—when s/he is imminently dying. Future considerations for applying neonatal palliative care include its integration into fetal diagnostic management, the developing era of genomic medicine, and expanding research into palliative care models and practices in the NICU.
Keele, Linda; Keenan, Heather T; Bratton, Susan L
The American Academy of Pediatrics (AAP) and the American Academy of Hospice and Palliative Medicine (AAHPM) have recommended minimal standards for palliative care (PC) team composition and availability. It is unknown whether team composition affects utilization of PC. The study objective was to describe pediatric PC team composition, evaluate whether composition and availability are associated with utilization, and examine PC referral patterns. The study was a descriptive survey. Subjects were pediatric PC team directors or hospital administrators at Pediatric Health Information System (PHIS) hospitals (N = 44). The overall response rate was 86%. Teams varied in size from team roles, referral rates were 34% greater in teams with an advanced nurse practitioner (ANP) (p = 0.07). Likewise, teams with acute pain, chronic pain, or hospice palliative medicine specialists tended to have greater referral rates (39%, 36%, and 25%), though reported differences were not statistically significant. Teams adherent to the original AAP recommendations had a 31% greater referral rate (p = 0.22). Teams available 24 hours daily had similar referral rates to those with less availability (0.47 versus 0.46 [p = 0.94]). Team composition and availability are not crucial to PC utilization. Hospitals with some personnel but not all recommended team members should create formal teams and modify them over time. The addition of team members that tend to increase referrals, namely ANPs and acute pain, chronic pain, or hospice palliative medicine specialists, should be considered.
Full Text Available ... 187,809 views 4:24 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: 5: ... 40,142 views 4:38 Portraits of Life, Love & Legacy Through Pediatric Palliative Care - Duration: 54:51. ...
van den Heuvel, Wim J. A.; Olaroiu, Marinela
Palliative care is directed to maintenance of quality of life and to prevent and to relief suffering of those with a life-threatening disease. Palliative care does not only concern the patient, but also the quality of life of family members and it deals with physical symptoms as well as with
Full Text Available ... 186,248 views 4:24 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: 5: ... 40,056 views 4:38 Portraits of Life, Love & Legacy Through Pediatric Palliative Care - Duration: 54:51. ...
Full Text Available ... Up next The Keeney Family discuss pediatric palliative care - Duration: 12:07. Hospice of the Western Reserve 11,132 views 12:07 Caroline Symmes' Story - Duration: 4:24. ... of Life, Love and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) ...
Full Text Available ... Reserve 11,132 views 12:07 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: ... Meriter 195,536 views 13:34 Portraits of Life, Love & Legacy Through Pediatric Palliative Care - Duration: 54: ...
Full Text Available ... report inappropriate content. Sign in Transcript Add translations 4,609 views Like this video? Sign in to ... Palliative Care - Duration: 3:29. American Cancer Society 4,363 views 3:29 Pediatric Palliative Care and ...
Murphy, Edel; Froggatt, Katherine; Connolly, Sheelah; O'Shea, Eamon; Sampson, Elizabeth L; Casey, Dympna; Devane, Declan
included studies. Two review authors independently assessed for inclusion all the potential studies we identified as a result of the search strategy. We resolved any disagreement through discussion or, when required, consulted with the rest of the review team. We independently extracted data and conducted assessment of methodological quality, using standard Cochrane methods. We identified two studies of palliative care interventions for people with advanced dementia. We did not pool data due to the heterogeneity between the two trials in terms of the interventions and the settings. The two studies measured 31 different outcomes, yet they did not measure the same outcome. There are six ongoing studies that we expect to include in future versions of this review.Both studies were at high risk of bias, in part because blinding was not possible. This and small sample sizes meant that the overall certainty of all the evidence was very low.One individually randomised RCT (99 participants) evaluated the effect of a palliative care team for people with advanced dementia hospitalised for an acute illness. While this trial reported that a palliative care plan was more likely to be developed for participants in the intervention group (risk ratio (RR) 5.84, 95% confidence interval (CI) 1.37 to 25.02), the plan was only adopted for two participants, both in the intervention group, while in hospital. The palliative care plan was more likely to be available on discharge in the intervention group (RR 4.50, 95% CI 1.03 to 19.75). We found no evidence that the intervention affected mortality in hospital (RR 1.06, 95% CI 0.53 to 2.13), decisions to forgo cardiopulmonary resuscitation in hospital or the clinical care provided during hospital admission, but for the latter, event rates were low and the results were associated with a lot of uncertainty.One cluster RCT (256 participants, each enrolled with a family carer) evaluated the effect of a decision aid on end-of-life feeding options on
Al Qadire, Mohammad
The main purpose of palliative care is to manage symptoms among patients, reduce their burden of pain, and improve their quality of life. Nurses are an essential part of the palliative care team in providing high standards of care since they spend the longest time with patients. However, lack of adequate knowledge of palliative care is considered as one of the main barriers to palliative care development and practise. To evaluate Jordanian nursing students' knowledge about palliative care. Design A quantitative research method and descriptive online-survey design were used. Settings and Participants The sample consisted of 220 students enrolled in five nursing schools (four governmental and one private) in Jordan. The Palliative Care Quiz for Nursing was used to measure students' knowledge. The sample consisted of 220 nursing students; the mean age was 20.5, SD 2.5, and most of the students were female (67), 74 (34%) were fourth-year students and 58 (26%) were in their third year. The total mean score was low, at 8.0 (SD 3.1), ranging from 0 to 18 and the number of correctly answered statements ranged from 60 (27%, statement no. 3) to 145 (66%, statement no. 2). It was found that there were no significant impacts (H (3)=5.69, p=0.137) for place of study. However, students' knowledge was strongly affected by their academic level (H (3)=12.60, p=0.005). Integrating palliative care education is required as the mainstay to improve students' knowledge and therefore practise. This education needs to be comprehensive in covering the basic principles of palliative care and symptom management and it should be distributed throughout the different courses to discuss palliative care within different contexts, such as elderly, paediatric and adult settings. © 2013.
Boss, Renee D.
Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining…
Full Text Available ... Little Stars 12,195 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,258 views 3:29 Pediatric Palliative ... views 3:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,474 views 5: ...
Full Text Available ... Little Stars 12,195 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,256 views 3:29 Pediatric Palliative ... views 3:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,410 views 5: ...
Full Text Available ... Queue __count__/__total__ It’s YouTube. Uninterrupted. Loading... Want music and videos with zero ads? Get YouTube Red. ... 010 views 1:55 Seasons Hospice & Palliative Care Music Therapy & Alzheimer's - Duration: 6:24. Seasons Hospice & Palliative ...
Woo, Kevin Y; Krasner, Diane L; Kennedy, Bruce; Wardle, David; Moir, Olivia
To provide information about palliative wound care management strategies for palliative patients and their circles of care. This continuing education activity is intended for physicians and nurses with an interest in skin and wound care. After participating in this educational activity, the participant should be better able to: 1. Recognize study findings, assessment tools, and non-pharmacologic strategies used for patients with palliative wounds. 2. Summarize pharmacologic and dressing treatment strategies used for wound care management of palliative patients. The principles of palliative wound care should be integrated along the continuum of wound care to address the whole person care needs of palliative patients and their circles of care, which includes members of the patient unit including family, significant others, caregivers, and other healthcare professionals that may be external to the current interprofessional team. Palliative patients often present with chronic debilitating diseases, advanced diseases associated with major organ failure (renal, hepatic, pulmonary, or cardiac), profound dementia, complex psychosocial issues, diminished self-care abilities, and challenging wound-related symptoms. This article introduces key concepts and strategies for palliative wound care that are essential for interprofessional team members to incorporate in clinical practice when caring for palliative patients with wounds and their circles of care.
Gwyther, Liz; Brennan, Frank; Harding, Richard
The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as
Hermsen, M.A.; Have, H.A.M.J. ten
With the growth and development of palliative care, interest in pastoral care, spirituality, and religion also seems to be growing. The aim of this article is to review the topic of pastoral care, spirituality, and religion appearing in the journals of palliative care, between January 1984 and
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.
Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai
The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.
Ferrell, Betty; Virani, Rose; Paice, Judith A; Coyle, Nessa; Coyne, Patrick
More than 50 million people die each year around the world. Nurses are crucial in providing care to these individuals and their families as they spend the most time at the bedside with patients and families. Yet many nurses have received little or no education about palliative care. The Open Society Institute (OSI) and the Open Medical Institute (OMI) partnered with End-of-Life Nursing Education Consortium (ELNEC) to develop an international nursing palliative care curriculum. This international curriculum was implemented with two training courses held in Salzburg, Austria in October 2006 (n=38) and April 2008 (n=39) representing 22 Eastern European/Central Asian countries. Participants were asked to establish goals in disseminating the palliative care information when they returned to their country. The participants were mentored/followed for a 12-month period to evaluate their palliative care knowledge as well as challenges encountered. The participants provided excellent ratings for the training courses indicating that the courses were stimulating and met their expectations. The 12-month follow-up demonstrated many challenges (i.e., lack of funds, institutional support, fear of death), in advancing palliative care within each participant's setting/country as well as many examples of successful implementation. There is an urgent need for improved palliative care throughout the world. The ELNEC-International curriculum is designed to address the need for increased palliative care education in nursing. In order to improve the quality of life for those facing life-threatening illnesses around the world, ongoing support is needed for world-wide palliative care educational efforts. Copyright 2009 Elsevier Ltd. All rights reserved.
Advances in pain control in palliative care: Pain in palliative care needs to be carefully assessed before treatment. R Krause, J Stanford. Abstract. No Abstract. Full Text: EMAIL FREE FULL TEXT EMAIL FREE FULL TEXT · DOWNLOAD FULL TEXT DOWNLOAD FULL TEXT · AJOL African Journals Online. HOW TO USE ...
Full Text Available ... shares the story 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 ...
Full Text Available ... out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? Cancel Unsubscribe Working... ... on Jan 8, 2014 This vignette shares the story of Rachel—a pediatric neuroblastoma patient—and her ...
Full Text Available ... views 54:51 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,370 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,227 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... total__ Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? Cancel ... later? Sign in to add this video to a playlist. Sign in Share More Report Need to ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,647 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... has been rented. This feature is not available right now. Please try again later. Published on Jan ... Gavin 49,286 views 4:13 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: ...
Full Text Available ... neuroblastoma patient—and her family. The story demonstrates how palliative care can positively influence a patient's and ... 3:50 4 Cardiac arrests in 14 hours, How our son survived - Duration: 4:38. usrooks 40, ...
Full Text Available ... now Try it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe ... This vignette shares the story of Rachel—a pediatric neuroblastoma patient—and her family. The story demonstrates ...
... now Try it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe ... This vignette shares the story of Rachel—a pediatric neuroblastoma patient—and her family. The story demonstrates ...
Full Text Available ... free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? Cancel ... later? Sign in to add this video to a playlist. Sign in Share More Report Need to ...
Full Text Available ... The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category Science & Technology License Standard YouTube License Show more Show less Comments are disabled ...
Full Text Available ... 21. KidsCancerChannel 62,777 views 5:21 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: 10:35. Little Stars 12,275 views 10:35 Teen Cancer Stories | ...
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 ...
Full Text Available ... views 12:07 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,703 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Jayard, S Stephen; Irudayadason, Nishant A; Davis, J Charles
Death is inevitable, but that does not mean it can be planned or imposed. It is an ethical imperative that we attend to the unbearable pain and suffering of patients with incurable and terminal illnesses. This is where palliative care plays a vital role. Palliative care has been growing faster in the world of medicine since its emergence as a specialty in the last decade. Palliative care helps to reduce physical pain while affirming the aspect of human suffering and dying as a normal process. The goal of palliative care is to improve the quality of life both of the patient and the family. Palliative care resonates with the healing ministry of Christianity that affirms the sanctity and dignity of human life from the moment of conception to natural death. Christianity is convinced that patients at the very end of their lives, with all their ailments and agonies, are still people who have been created in the image and likeness of God. The human person is always precious, even when marked by age and sickness. This is one of the basic convictions that motivate Christians to take care of the sick and the dying. Palliative care is a great opportunity for Christians to manifest God's unfailing love for the terminally ill and the dying.
van Gurp, J.; van Selm, M.; van Leeuwen, E.; Vissers, K.; Hasselaar, J.
Background: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual
Benyahia, Stéphanie; N'Fissi, Karima; Sahut-D'Izarn, Marine; Cudennec, Tristan
Epidemiological data relating to cancer and the ageing of the population highlight the need for oncology, geriatrics and palliative care to work more closely together. Geriatric and palliative care assessments in oncology are complex procedures and result in the modification of the oncological therapeutic choices. They have a significant impact on the methods of treatment of the patients concerned. Copyright © 2017 Elsevier Masson SAS. All rights reserved.
Cheng, Daryl R; Teh, Andrew
Greater emphasis needs to be placed on medical student palliative care education within the Australian arena. The development of a comprehensive, relevant and practical educational curriculum in this area during medical school is imperative in order to adequately equip the future junior medical workforce. Further development of a national palliative care curriculum as well as research comparing various teaching methods and curricula should be the priorities in the near future.
Ntizimira, Christian R; Nkurikiyimfura, Jean Luc; Mukeshimana, Olive; Ngizwenayo, Scholastique; Mukasahaha, Diane; Clancy, Clare
We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said 'in the middle of difficulty lies opportunity' and this sentiment could not be more relevant to the development of palliative care programmes. Through advocacy, policy, and staunch commitment to compassion, Rwandan healthcare workers are proving how palliative care can be successfully integrated into a healthcare system. As a global healthcare community, we should be asking what opportunities exist to do this across the African continent. Champions of palliative care have a chance to forge lasting collaborations between international experts and African healthcare workers. This global network could not only advocate for palliative care programmes but it would also help to create a culture where palliative care is viewed as a necessary part of all healthcare systems.
Madden, Kevin; Wolfe, Joanne; Collura, Christopher
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. Copyright © 2015 Elsevier Inc. All rights reserved.
Full Text Available End-of-life care is an integral part of neurology practice, and neuropalliative medicine is an emerging neurology subspeciality. This begins with serious illness communication as a protocol-based process that depends on an evaluation of patient autonomy and accurate prognostication. Communication needs vary between chronic, life-limiting neurologic illnesses and acute brain injury. In an ideal situation, the patient's wishes are spelled out in advance care plans and living wills, and surrogates have only limited choices for implementation. Palliative care prepares for decline and death as an expected outcome and focuses on improving the quality of life for both the patients and their caregivers. In the Intensive Care Unit, this may require clarity on withholding and withdrawal of treatment. In all locations of care, the emphasis is on symptom control. Neurologists are the quintessential physicians, and our “dharma” is best served by empathetically bringing our technical knowledge and communication skills into easing this final transition for our patients and their families to the best of our ability.
Miller, Susan C; Lima, Julie C; Intrator, Orna; Martin, Edward; Bull, Janet; Hanson, Laura C
U.S. nursing home (NH) residents with dementia have limited access to specialty palliative care beyond Medicare hospice. The objective of this study was to examine the value of expanded palliative care access for NH residents with moderate-to-very severe dementia. We merged palliative care consultation data in 31 NHs in two states to Medicare data to identify residents with consultations, moderate-to-very severe dementia, and deaths in 2006-2010. Initial palliative consultations were identified as occurring later and earlier (1-30 days and 31-180 days before death, respectively). Three controls for each consultation recipient were selected using propensity score matching. Weighted multivariate analyses evaluated the effect of consultations on hospital or acute care use seven and 30 days before death and on (potentially) burdensome transitions (i.e., hospital or hospice admission three days before death or two plus acute care transitions 30 days before death). With earlier consultation (vs. no consultation), hospitalization rates in the seven days before death were on average 13.2 percentage points lower (95% confidence interval [CI] -21.8%, -4.7%) and with later consultation 5.9 percentage points lower (95% CI -13.7%, +4.9%). For earlier consultations (vs. no consultations), rates were 18.4 percentage points lower (95% CI -28.5%, -8.4%) for hospitalizations and 11.9 lower (95% CI -20.7%, -3.1%) for emergency room visits 30 days before death; they were 20.2 percentage points lower (95% CI -28.5%, -12.0%) for burdensome transitions. Consultations appear to reduce acute care use and (potentially) burdensome transitions for dying residents with dementia. Reductions were greater when consultations were earlier. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Weissman, David E; Morrison, R Sean; Meier, Diane E
Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.
Spaulding, Aaron; Harrison, Debra A; Harrison, Jeffrey P
Palliative care services are becoming more prevalent in the United States as greater portions of the population are requiring end-of-life services. Furthermore, recent policy changes and service foci have promoted more continuity and encompassing care. This study evaluates characteristics that distinguish hospitals with a palliative care program from hospitals without such a program in order to better define the markets and environments that promote the creation and usage of these programs. This study demonstrates that palliative care programs are more likely in communities with favorable economic factors and higher Medicare populations. Large hospitals with high occupancy rates and a high case mix index use palliative care programs to better meet patient needs and improve hospital efficiency. Managerial, nursing, and policy implications are discussed relating to further usage and implementation of palliative care programs.
Veer, A. de; Stringer, B.; Meijel, B. van; Verkaik, R.; Francke, A.
Background: Homeless people often encounter multiple problems and have a shorter life- expectancy. Little is known about how palliative care for this group is organized and can be improved. Aim: To explore and describe aspects of the palliative care for homeless people in The Netherlands from the
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.
Full Text Available Palliative aged care is rapidly developing as a specialty area, involving the collaboration and combined expertise of the fields of gerontology, geriatric care, and palliative care. The similarities and differences between these fields provide rich ground for complementing and informing each other's practice and perspectives and in working together to develop health and social policy, which acknowledge the unique factors distinguishing the experience of many elderly people with life-limiting illness. In recent years, two significant projects have been initiated in Australia: (1 the Australian Palliative Residential Aged Care Project (APRAC, which developed evidence-based guidelines for palliative aged care; and (2 the joint development of a postgraduate online program in Palliative Care in Aged Care, by the Department of Palliative and Supportive Services and the Centre for Ageing Studies, a WHO Collaborating Centre, both of Flinders University, Adelaide. Both projects have reconciled the paradigms, philosophies, and evidence-based knowledge of both palliative care and aged care to create for the first time a set of guidelines and an educational program, which will inform and influence the development of practice in this important and developing clinical area.
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
Séfora Gomez Portela
Full Text Available This research aimed at understanding and reflecting on the perceptions of occupational therapists regarding the implementation of palliative care in home care. This is an exploratory, qualitative study, through semi-structured interviews, conducted in the second semester of 2012 with eight occupational therapists with experience in palliative care in the city of São Paulo. Content analysis identified four themes: characterization and professional trajectory in the field, understanding the concepts of palliative care, home care and palliative care, and occupational therapy and palliative care in home care. The results suggest that the role of the occupational therapist in this field has taken place at different levels of health care, being addressed to people with varying needs. The use of the concept of palliative care by the interviewees exceeds the notion of end of life, following the changes in the epidemiological transition. They understand that professional services follow the trend of national palliative care services with focus on specialized levels, but manifest the importance of its implementation in primary and home care. Among the barriers to practice, they identified the complexity of “being at home “, peculiarities of palliative care with high cost demands, lack of infrastructure and implementation of the current policy. Professional training and scientific roduction in the area were viewed as inadequate, although they identified a call for change. The interviewees recognized palliative care in home care as a strong professional field, but one still requiring study and discussions regarding its limits and conditions of implementation, especially in the Unified Health System.
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,636 views 5: ... 27. HammondCare 29,011 views 22:27 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Osman, H. (Hibah); Rihan, A. (Alaa); Garralda, E. (Eduardo); Rhee, J.Y. (John Y.); Pons-Izquierdo, J.J. (Juan José); Lima, L. (Liliana) de; Tfayli, A. (Arafat); Centeno-Cortes, C. (Carlos)
BACKGROUND Information on the state of palliative care development in Eastern Mediterranean countries is scant. This study is the first of its kind in conducting a systematic descriptive analysis of palliative care development in the region. AIMS To describe the current status of palliative care in the Eastern Mediterranean Region according to the World Health Organization (WHO) public health strategy for integrating palliative care: policies, opioid accessibility, ...
Gaskins, Jessica L
Palliative care is not a term solely used for humans when discussing health care; the term is also used when discussing veterinary patients. Pets are considered part of the family by pet owners, and they have a special relationship that only another pet owner can fully understand. This article discusses some of the healthcare problems that affect pets (and their owners), statistics on the most commonly used medications for veterinary patients, quality of life, and discussions on the veterinary pharmacist-owner-palliative pet relationship and how compounding pharmacists can prepare patient-specific medications.
This thesis describes hope in palliative care patients, their family members and their healthcare professionals. An interpretative synthesis of the literature (chapter 2) and a metaphor analysis of semi-structured interviews with palliative care professionals (chapter 3) highlight palliative care
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
Bischoff, Kara; O'Riordan, David L; Marks, Angela K; Sudore, Rebecca; Pantilat, Steven Z
Care planning is a critical function of palliative care teams, but the impact of advance care planning and goals of care discussions by palliative care teams has not been well characterized. To describe the population of patients referred to inpatient palliative care consultation teams for care planning, the needs identified by palliative care clinicians, the care planning activities that occur, and the results of these activities. This was a prospective cohort study conducted between January 1, 2013, and December 31, 2016. Seventy-eight inpatient palliative care teams from diverse US hospitals in the Palliative Care Quality Network, a national quality improvement collaborative. Standardized data were submitted for 73 145 patients. Inpatient palliative care consultation. Overall, 52 571 of 73 145 patients (71.9%) referred to inpatient palliative care were referred for care planning (range among teams, 27.5%-99.4% of patients). Patients referred for care planning were older (73.3 vs 67.9 years; F statistic, 1546.0; P planning needs in 52 825 of 73 145 patients (72.2%) overall, including 42 467 of 49 713 patients (85.4%) referred for care planning and in 10 054 of 17 475 patients (57.5%) referred for other reasons. Through care planning conversations, surrogates were identified for 10 571 of 11 149 patients (94.8%) and 9026 patients (37.4%) elected to change their code status. Substantially more patients indicated that a status of do not resuscitate/do not intubate was consistent with their goals (7006 [32.1%] preconsultation to 13 773 [63.1%] postconsultation). However, an advance directive was completed for just 2160 of 67 955 patients (3.2%) and a Physicians Orders for Life-Sustaining Treatment form was completed for 8359 of 67 955 patients (12.3%) seen by palliative care teams. Care planning was the most common reason for inpatient palliative care consultation, and care planning needs were often found even when the consultation was
To measure how care needs, health and length of stay in permanent residential aged care differs by assessed need for palliative care. On entry into permanent residential aged care, people's care needs and health conditions are assessed on the Aged Care Funding Instrument. Data for the period 2008-2009 and 2015-2016 were analysed for trends in care needs, health conditions, length of stay and separation reason across assessed need for palliative care. Assessed care needs have increased for all people in residential aged care over this period, and people appraised for palliative care were more likely to be rated 'high' in need for support in activities of daily living. People appraised for palliative care had a higher prevalence of cancer and shorter length of stays. Palliative care appraisal is associated with increased complexity in assessed care needs, different profiles of health and shorter length of stays in permanent residential aged care. © 2017 Australian Institute of Health and Welfare Australasian Journal on Ageing © 2017 AJA Inc.
Cassel, J Brian; Bowman, Brynn; Rogers, Maggie; Spragens, Lynn H; Meier, Diane E
Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.
Full Text Available ... Little Stars 12,195 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,257 views 3:29 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,434 views 5: ...
Full Text Available ... 315 views 4:12 Children's Palliative Care - Duration: 2:26. Filmkaar 1,071 views 2:26 Sevanah Marecle's Story - Another child fighting cancer - ... Croup Stridor Barking Cough visual & audio sound - Duration: 2:50. Juliette Anderson 2,467,989 views 2: ...
Full Text Available ... Support at Nemours/Alfred I. duPont Hospital for Children - Duration: 3:34. Nemours 1,004 views 3: ... 258,398 views 11:08 Palliative Care at Children's of Alabama - Duration: 4:12. ChildrensofAlabama 1,307 ...
Hermsen, M.A.; Have, H.A.M.J. ten
Working as a multidisciplinary or interdisciplinary team is an essential condition to provide good palliative care. This widespread assumption is based on the idea that teamwork makes it possible to address the various needs of the patient and family more effectively. This article is about teamwork
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,819 views 5: ... 34. Nemours 1,015 views 3:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,326 views 5: ... University (NEOMED) 25,404 views 5:39 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,013 views 5: ... 34. Nemours 1,015 views 3:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... Duration: 31:12. University of California Television (UCTV) 2,744 views 31:12 Palliative Care: Butterfly Children's ... Croup Stridor Barking Cough visual & audio sound - Duration: 2:50. Juliette Anderson 2,433,935 views 2: ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,386 views 5: ... University (NEOMED) 25,404 views 5:39 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... Little Stars 12,462 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,359 views 3:29 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,400 views 5: ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,462 views 5: ... Little Stars 12,462 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,164 views 5: ... 34. Nemours 1,048 views 3:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... a patient's and family's experience with illness. Category Science & Technology License Standard YouTube License Show more Show ... 51 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,309 views 3:29 Pediatric ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,260 views 5: ... 50. PCC4UProject 42,853 views 12:50 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,535 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Adriaansen, M.J.M.; Achterberg, T. van
This article describes a methodological study concerning the development of a test instrument that can be used for measuring the effects of a course in palliative care on registered nurses and licensed practical nurses. This test instrument is comprised of two parts: an expertise and insight test
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,040 views 5: ... 34. Nemours 1,015 views 3:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... a patient's and family's experience with illness. Category Science & Technology License Standard YouTube License Show more Show ... 35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,309 views 3:29 Pediatric ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,376 views 5: ... Little Stars 12,462 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 13:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,079 views 5: ... Little Stars 12,462 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,486 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 5:27 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,983 views 5: ... Little Stars 12,275 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,573 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,059 views 5: ... Little Stars 12,275 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,995 views 5: ... 34. Nemours 1,015 views 3:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,559 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... 35. Little Stars 12,275 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer ... Restricted Mode: Off History Help Loading... Loading... Loading... About Press Copyright Creators Advertise Developers +YouTube Terms Privacy ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,707 views 5: ... Little Stars 12,275 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 3:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,495 views 5: ... Melissa Saban 77,197 views 3:50 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 13:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,605 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,732 views 5: ... Little Stars 12,275 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,858 views 5: ... Little Stars 12,275 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,409 views 5: ... University (NEOMED) 25,404 views 5:39 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... 5:21. KidsCancerChannel 62,647 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer ... The Zimmer Family Story - Duration: 13:34. UnityPoint Health - Meriter 196,167 views 13:34 Riley's journey ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,732 views 5: ... 34. Nemours 1,015 views 3:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... University (NEOMED) 24,728 views 5:39 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,267 views 3:29 Little Stars – ... views 3:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,538 views 5: ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,026 views 5: ... 34. Nemours 1,015 views 3:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,610 views 5: ... Little Stars 12,275 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... University (NEOMED) 24,803 views 5:39 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,268 views 3:29 Little Stars – ... views 3:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,558 views 5: ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,135 views 5: ... Little Stars 12,462 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,355 views 5: ... University (NEOMED) 25,404 views 5:39 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,582 views 5: ... 34. Nemours 1,004 views 3:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,858 views 5: ... 34. Nemours 1,015 views 3:34 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... 24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,888 views 5:21 Portraits of Life, Love and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 25,017 ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,623 views 5: ... Little Stars 12,275 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 5:39 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,517 views 5: ... Little Stars 12,587 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 62,888 views 5: ... Little Stars 12,275 views 10:35 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Huang, Hsiu-Li; Weng, Li-Chueh; Yeh, Mei Chang
Dementia is irreversible. Although currently available drugs are typically able to ameliorate symptoms and slow down its progress, there is yet no known cure for this disease. The inevitable consequence of dementia is the gradual deterioration of the condition until final decline into the end of life stage. The priority care plan for patients with end stage dementia, therefore, must focus on palliative care that provides for a comfortable and high as possible quality of life. However, dementia is rarely looked upon as an end-stage disease. In 2009, the Taiwan National Health Insurance began reimbursing the costs of hospice care for patients with end stage dementia. This paper discusses end stage dementia cases in which patients received inappropriate interventions during their final days as well as the barriers faced in developing countries to providing palliative care. This paper also suggests strategies to promote quality of care and quality of life in people with end of life dementia.
Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally
A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration. PMID:27930401
Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R
While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.
Iranmanesh, Sedigheh; Razban, Farideh; Tirgari, Batool; Zahra, Ghazanfari
Palliative care requires nurses to be knowledgeable about different aspects of the care that they provide for dying patients. This study, therefore, was conducted to examine oncology and intensive care nurses' knowledge about palliative care in Southeast Iran. Using the Palliative Care Quiz for Nursing (PCQN), 140 oncology and intensive care unit (ICU) nurses' knowledge about palliative care in three hospitals supervised by Kerman University of Medical Sciences was assessed. In PCQN, the mean score was 7.59 (SD: 2.28). The most correct answers were in the category of management of pain and other symptoms (46.07%). The lowest correct answers were in the category of psychosocial and spiritual care (19.3%). These findings suggest that nurses' knowledge about palliative care can be improved by establishing specific palliative care units to focus on end-of-life care. This establishment requires incorporation of an end-of-life nursing education curriculum into undergraduate nursing studies.
Zieschang, T; Oster, P; Pfisterer, M; Schneider, N
Patients with dementia are an important target group for palliative care since particularly in advanced stages and at the end of life they often have complex health care and psychosocial needs. However, people with dementia have inappropriate access to palliative care. So far, palliative care focuses on cancer patients. Among other reasons, this is due to the different illness trajectories: while in cancer a relatively clear terminal phase is typical, in dementia functional decline is gradual without a clear terminal phase, making advanced care planning more difficult. Good communication among health care providers and with the patient and his/her family is essential to avoid unnecessary or even harmful interventions at the end of life (e.g., inserting a percutaneous endoscopic gastrostomy, PEG). To maintain the patient's autonomy and to deliver health care according to the individual preferences, it is important to appropriately inform the patient and the family at an early stage about the disease and problems that may occur. In this context, advanced directives can be helpful.
Hay, Casey M; Lefkowits, Carolyn; Crowley-Matoka, Megan; Bakitas, Marie A; Clark, Leslie H; Duska, Linda R; Urban, Renata R; Creasy, Stephanie L; Schenker, Yael
Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.
Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert
Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units.
Major strides have been made in expanding the content of professional education in palliative care to include a focus on attitudes which nurture compassionate care as well as on knowledge and skills. However, accessing the emotional spheres--for instance the fear and helplessness of caregivers--remains a challenge. The inclusion of music therapy techniques as a teaching modality, with an emphasis on emotional experience and nonverbal expression, is suggested to address the latter and to enhance affective growth and learning.
Suvarnabhumi, Krishna; Sowanna, Non; Jiraniramai, Surin; Jaturapatporn, Darin; Kanitsap, Nonglak; Soorapanth, Chiroj; Thanaghumtorn, Kanate; Limratana, Napa; Akkayagorn, Lanchasak; Staworn, Dusit; Praditsuwan, Rungnirand; Uengarporn, Naporn; Sirithanawutichai, Teabaluck; Konchalard, Komwudh; Tangsangwornthamma, Chaturon; Vasinanukorn, Mayuree; Phungrassami, Temsak
The Thai Medical School Palliative Care Network conducted this study to establish the current state of palliative care education in Thai medical schools. A questionnaire survey was given to 2 groups that included final year medical students and instructors in 16 Thai medical schools. The questionnaire covered 4 areas related to palliative care education. An insufficient proportion of students (defined as fewer than 60%) learned nonpain symptoms control (50.0%), goal setting and care planning (39.0%), teamwork (38.7%), and pain management (32.7%). Both medical students and instructors reflected that palliative care education was important as it helps to improve quality of care and professional competence. The percentage of students confident to provide palliative care services under supervision of their senior, those able to provide services on their own, and those not confident to provide palliative care services were 57.3%, 33.3%, and 9.4%, respectively. The lack of knowledge in palliative care in students may lower their level of confidence to practice palliative care. In order to prepare students to achieve a basic level of competency in palliative care, each medical school has to carefully put palliative care content into the undergraduate curriculum.
Brown, Jami S; Halupa, Colleen
Critical care nurses provide palliative care to many patients; often, this includes the patient diagnosed with human immunodeficiency virus (HIV)/AIDS. Ongoing education about both palliative care and this complex diagnosis prepares the nurse to provide compassion and informed care. This study examines the effects of an educational intervention addressing palliative care in the intensive care unit and the needs of the HIV/AIDS patients and families. The study will evaluate the critical care nurses' knowledge and competence in caring for this population following the educational sessions. Thirty critical care nurses were recruited from the critical care unit at a hospital in the south. An HIV/AIDS palliative care course provided participants background knowledge, general principles, and opportunities for critical thinking regarding palliative care. A pretest and posttest on palliative care were provided to each subject to assess knowledge and confidence in palliative care in critical care nursing. The convenience sample of 30 nurses attained a mean pretest score of 82.9%. Their scores improved to 93.5% following the palliative care course. The nurses felt they improved in providing palliative care to patients and in taking responsibility for their practice. Ninety-three percent of the participants wanted to incorporate a palliative care course in nursing orientation. The course improved nurses' knowledge of palliative care for HIV/AIDS patients and their competency in palliative care. Thus, the palliative care course gave nurses deeper insight and improved their ability to provide competence palliative care.
As the spiritual care needs of patients and their loved ones have become an essential component of palliative care, clinicians are being challenged to develop new ways of addressing the spiritual issues that often arise in the palliative care setting. Recent research has given attention to the communication strategies that are effective with patients or their loved ones who report that they are seeking a miraculous physical healing. However, these strategies often assume a unilateral rather than collaborative view of divine intervention. Communication strategies that are effective with unilateral understandings of divine intervention may be contraindicated with those who hold to a collaborative view of divine intervention. Greater attention to language of human-divine interaction along with approaching faith healing as a third modality of treatment are explored as additional interventions.
Sampson, Elizabeth L
The number of people with dementia will rise dramatically over the next 20 years. Currently, one in three people over the age of 65 will die with dementia. A PubMed search using MeSH headings for 'dementia' AND 'palliative care' and for specific areas, i.e. enteral feeding. National reports, UK guidelines and policies were also consulted. Advanced dementia is now being perceived as a 'terminal illness' with a similar symptom burden and prognosis to advanced cancer. People with dementia have poor access to good quality end-of-life care. Interventions such as antibiotics, fever management policies and enteral tube feeding remain in use despite little evidence that they improve quality of life or other outcomes. Research is required on the effectiveness of 'holistic' palliative care, outcome measures and the impact on carers and families.
As the music therapy profession has developed internationally over the last 25 years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, song-writing and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.
Francke, A.F.; Claessen, S.J.J.; Deliens, L.
Aim: To measure the quality of palliative care, a CQ-index (Consumer Quality-index) was used. A CQ-index is a questionnaire assessing actual care experiences, rather than satisfaction. The questionnaire combines items on actual care experiences and items on how important certain quality aspects are
Cooper, Rhonda S
The role of the professional chaplain on the palliative care team in the health care setting formalizes the concern for the emotional, spiritual, and social well-being of the care recipients and their caregivers. The chaplain also has a peculiar role on the team, in that her most fundamental task is her intentional listening-and-hearing of the other person's story. One palliative chaplain introduces herself as a Story Catcher to care recipients, in an effort both to overcome the resistance some may have to her presence on the team and communicate her essential role and intent in providing spiritual care. This self-appointed sobriquet resonates with the author's embrace of the theory and practice of the late theologian, educator, and civil rights activist Nelle Morton, who coined the phrase "hearing into speech" to describe the process by which another person, through being truly heard and entering into a relationship with the hearer, claims her/his own truth, hope, and identity in the face of adversity. The chaplain as Story Catcher functions as the agent of healing and hope for those who choose to tell their stories and are heard, as they resist their illness and death rather than submit to its indignity. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Full Text Available Terrah L Foster,1,2 Cynthia J Bell,1 Carey F McDonald,2 Joy S Harris,3 Mary Jo Gilmer,1,21Vanderbilt University School of Nursing, Nashville, 2Monroe Carell Jr Children's Hospital at Vanderbilt, Nashville, 3Vanderbilt University, Nashville, TN, USAAbstract: Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediatric oncology populations. This paper describes pediatric palliative care and provides an overview of literature related to the physical, psychological, social, and spiritual domains of palliative nursing care for children and adolescents with cancer. Nurses can provide optimal palliative care by accounting for children's understanding of death, encouraging early initiation of palliative care services, and improving utilization of pediatric palliative care in cancer settings. Specific roles of registered nurses and advanced practice nurses in pediatric palliative care will be addressed. Recommendations for future research are made to further advance the science of pediatric palliative care and decrease suffering for children and teens with cancer.Keywords: pediatric palliative care, pediatric cancer, oncology, child, suffering
Holmenlund, Kristina; Sjogren, Per; Nordly, Mie
was to review the existing literature about SPC and its effect on QoL, on physical and psychological symptoms, and on survival in adult patients with advanced cancer. Method: We utilized a search strategy based on the PICO (problem/population, intervention, comparison, and outcome) framework and employed......Objective: Due to the multiple physical, psychological, existential, and social symptoms involved, patients with advanced cancer often have a reduced quality of life (QoL), which requires specialized palliative care (SPC) interventions. The primary objective of the present systematic review...... terminology related to cancer, QoL, symptoms, mood, and palliative care. The search was performed in Embase, PubMed, and the Cochrane Central Register of Controlled Trials. Selected studies were analyzed and categorized according to methods, results, quality of evidence, and strength of recommendation...
Fernanda Laporti Seredynskyj
Full Text Available The present study aimed at understanding the perception of older adults who are receiving palliative oncological care on self care in relation to different stages of the disease and how such perception affected their lives. This is a qualitative study using oral history conducted with 15 older adults receiving palliative chemotherapy treatment in a health institution. The following categories emerged: social network, perspectives for confronting life, changes and spirituality. It is necessary for nursing staff to understand this process so that the measures implemented take into account all of the implications of the disease and aim at improving quality of life. doi: 10.5216/ree.v16i2.22795.
Benyó, Gábor; Lukács, Miklós; Busa, Csilla; Mangel, László; Csikós, Ágnes
Modern palliative-hospice care has gained space in Europe for more than 50 years. Since the initial empirical work of Cicely Saunders, palliative medicine has gained its place in evidence-based medicine in more and more countries. However, development, as in many other medical fields, is not uniform, there are big differences between countries in the world. There are also significant differences in development of care and the level of services within the European Union amongst Western and Eastern European countries. These differences affect the professional approach, legislative mechanisms and social acceptance. Hungarian palliative-hospice care has developed significantly over the past 15 years. For further development thoughtful strategic steps and service development is needed. The integration of palliative care into standard oncology is an international requirement, which also appears in the form of professional guidelines. Hungary has also played a role in the development of the European model of integrated palliative care of which Hungarian implementation, the "Pécs model", is discussed in detail in our paper.
Sussman, Jonathan; Barbera, Lisa; Bainbridge, Daryl; Howell, Doris; Yang, Jinghao; Husain, Amna; Librach, S Lawrence; Viola, Raymond; Walker, Hugh
A number of palliative care delivery models have been proposed to address the structural and process gaps in this care. However, the specific elements required to form competent systems are often vaguely described. The purpose of this study was to explore whether a set of modifiable health system factors could be identified that are associated with population palliative care outcomes, including less acute care use and more home deaths. A comparative case study evaluation was conducted of 'palliative care' in four health regions in Ontario, Canada. Regions were selected as exemplars of high and low acute care utilization patterns, representing both urban and rural settings. A theory-based approach to data collection was taken using the System Competency Model, comprised of structural features known to be essential indicators of palliative care system performance. Key informants in each region completed study instruments. Data were summarized using qualitative techniques and an exploratory factor pattern analysis was completed. 43 participants (10+ from each region) were recruited, representing clinical and administrative perspectives. Pattern analysis revealed six factors that discriminated between regions: overall palliative care planning and needs assessment; a common chart; standardized patient assessments; 24/7 palliative care team access; advanced practice nursing presence; and designated roles for the provision of palliative care services. The four palliative care regional 'systems' examined using our model were found to be in different stages of development. This research further informs health system planners on important features to incorporate into evolving palliative care systems.
Reimer-Kirkham, Sheryl; Sawatzky, Richard; Roberts, Della; Cochrane, Marie; Stajduhar, Kelli
The purpose of the study was to examine nurses' and nursing assistants' perspectives of a palliative approach in a variety of nursing care settings that do not specialise in palliative care. Ageing populations worldwide are drawing increasing attention to palliative care. In particular, people with advancing chronic life-limiting conditions often have unmet needs and may die in acute medical, residential care and home health settings without access to palliative care. A palliative approach offers an upstream orientation to adopt palliative care principles to meet the needs of people with life-limiting chronic conditions, adapt palliative care knowledge to other chronic illness conditions, and integrate and contextualise this knowledge within the healthcare system (Sawatzky et al. 2016). A qualitative study using the method of interpretive description carried out by a nursing research-practice collaborative, Initiative for a Palliative Approach: Evidence and Leadership (iPANEL). Twenty-five nurses and five nursing assistants from across British Columbia, Canada participated in interviews and focus groups. Thematic analysis was used to analyse the data. The overarching theme was that of participants close to a palliative approach in that they cared for people who would benefit from a palliative approach, they were committed to providing better end-of-life care, and they understood palliative approach as an extension of specialised palliative care services. Participants varied in their self-reported capacity to integrate a palliative approach, as they were influenced by role clarity, interprofessional collaboration and knowledge. Integration of a palliative approach requires a conceptual shift and can be enhanced through interpersonal relationships and communication, role clarification and education. Nurses care for people with advancing chronic life-limiting conditions in a variety of settings who would benefit from a palliative approach. © 2016 John Wiley & Sons
Ntizimira, Christian R; Nkurikiyimfura, Jean Luc; Mukeshimana, Olive; Ngizwenayo, Scholastique; Mukasahaha, Diane; Clancy, Clare
We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said ?in the middle of difficulty lies opportunity? and this sentiment coul...
Schmiedebach, H-P; Woellert, K
Many of the judicial and ethical questions raised by euthanasia are still the subject of controversial discussions. In this context the article broaches the issues of the doctor- patient relationship, patient's right to autonomy, and advance directive. It deals with the present judicial possibilities of euthanasia in Germany with reference to the situation in the Netherlands. Finally, there is an outlook on the role of palliative care and of hospices.
Whittall, Dawn; Lee, Susan; O'Connor, Margaret
To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment
Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro
Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort. Copyright © 2016 Elsevier Inc. All rights reserved.
Hills, Judith; Paice, Judith A; Cameron, Jacqueline R; Shott, Susan
One's spirituality or religious beliefs and practices may have a profound impact on how the individual copes with the suffering that so often accompanies advanced disease. Several previous studies suggest that negative religious coping can significantly affect health outcomes. The primary aim of this study was to explore the relationship between spirituality, religious coping, and symptoms of distress among a group of inpatients referred to the palliative care consult service. Pilot study. The study was conducted in a large academic medical center with a comprehensive Palliative Care and Home Hospice Program. (1) National Comprehensive Cancer Network Distress Management Assessment Tool; (2) Pargament Brief Religious Coping Scale (Brief RCOPE); (3) Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp); (4) Puchalski's FICA; and (5) Profile of Mood States-Short Form (POMS-SF). The 31 subjects surveyed experienced moderate distress (5.8 +/- 2.7), major physical and psychosocial symptom burden, along with reduced function and significant caregiving needs. The majority (87.2%) perceived themselves to be at least somewhat spiritual, with 77.4% admitting to being at least somewhat religious. Negative religious coping (i.e., statements regarding punishment or abandonment by God) was positively associated with distress, confusion, depression, and negatively associated with physical and emotional well-being, as well as quality of life. Palliative care clinicians should be alert to symptoms of spiritual distress and intervene accordingly. Future research is needed to identify optimal techniques to address negative religious coping.
Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana
Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques
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
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.
Full Text Available Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities.
Khosla, Divya; Patel, Firuza D; Sharma, Suresh C
Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities.
Sujatha, Rajaragupathy; Jayagowri, Karthikeyan
Palliative care knowledge is being given meager importance in the curriculum of medical and other allied medical sciences. It is vital that all health care practitioners including medical, pharmacy, physiotherapy and nursing are aware and apply the best principles of palliative care. To assess the awareness of palliative care among undergraduate students of medical, nursing, pharmacy and physiotherapy. The study population included total of 200 students. Among 200 students, 50 were from each of the colleges of medicine, nursing, pharmacy and physiotherapy. After obtaining informed consent, questionnaire was given. The questionnaire contained the sociodemographic profile and 35 statements under nine groups, for which the respondents were expected to answer one out of the three options (Yes, No, Don't know). The groups of statements deal with palliative care definition, its philosophy, communication issues, non-pain symptoms, medications use and context of application of palliative care. It was found that less than 20% of nursing students were unaware of palliative care. Among the undergraduates of college of pharmacy, more than 50% had no knowledge of palliative care. More than 80% of physiotherapy, nursing and medical students agree that death should occur without any pain or symptoms. The need of palliative care was well understood by more than 70% of students of physiotherapy, pharmacy, nursing and medical colleges. Basic knowledge about palliative care was inadequate among the undergraduate students related to healthcare.
Wu, Chin-Chia; Hsu, Ta-Wen; Chang, Chun-Ming; Lee, Cheng-Hung; Huang, Chih-Yuan; Lee, Ching-Chih
Although palliative chemotherapy during end-of-life care is used for relief of symptoms in patients with metastatic cancer, chemotherapy may lead to more aggressive end-of-life care and less use of hospice service. This is a population-based study of the association between palliative chemotherapy and aggressiveness of end-of-life care. Using the National Health Insurance Research Database of Taiwan, we identified 49,920 patients with metastatic cancer who underwent palliative chemotherapy from January 1, 2009, to December 31, 2011. Patients who received chemotherapy 2-6 months before death were included. Aggressiveness of end-of-life care was examined by previously reported indicators. Cardiopulmonary resuscitation and endotracheal tube intubation were included as indicators of aggressive end-of-life care. The association between palliative chemotherapy and hospice care was studied. Palliative chemotherapy was associated with more aggressive treatment. After adjustment for patient age, sex, Charlson Comorbidity Index score, cancer group, primary physician's specialty, postdiagnosis survival, hospital characteristics, hospital caseload, urbanization, and geographic regions, more than one emergency room visit (p care unit admission (p life care were significantly more common in patients receiving palliative chemotherapy. Patients who did not receive palliative chemotherapy received more hospice care in the last 6 months of life (p life care, including more emergency room visits and intensive care unit admissions, and endotracheal intubation. The patients who received palliative chemotherapy received less hospice service toward the end of life. Palliative chemotherapy is used for patients with incurable cancer toward the end of life (EOL). Aggressiveness of EOL care and hospice care are related to the quality of life of these patients. This study of data from the Taiwanese National Health Insurance Research Database found that palliative chemotherapy led to more
Dementia is a progressive life limiting condition with increasing prevalence and complex needs. Palliative care needs of patients with dementia are often poorly addressed; symptoms such as pain are under treated while these patients are over subjected to burdensome interventions. Research into palliative care in dementia remains limited but recent developments together with national guidelines and policies set foundations for improving the delivery of palliative care to this group of the popu...
Brown, J. B.; Sangster, M.; Swift, J.
OBJECTIVE: To examine factors that influence family physicians' decisions to practise palliative care. DESIGN: Qualitative method of in-depth interviews. SETTING: Southwestern Ontario. PARTICIPANTS: Family physicians who practise palliative care on a full-time basis, who practise on a part-time basis, or who have retired from active involvement in palliative care. METHOD: Eleven in-depth interviews were conducted to explore factors that influence family physicians' decisions to practise palli...
Suvarnabhumi, Krishna; Sowanna, Non; Jiraniramai, Surin; Jaturapatporn, Darin; Kanitsap, Nonglak; Soorapanth, Chiroj; Thanaghumtorn, Kanate; Limratana, Napa; Akkayagorn, Lanchasak; Staworn, Dusit; Praditsuwan, Rungnirand; Uengarporn, Naporn; Sirithanawutichai, Teabaluck; Konchalard, Komwudh; Tangsangwornthamma, Chaturon
Objective The Thai Medical School Palliative Care Network conducted this study to establish the current state of palliative care education in Thai medical schools. Methods A questionnaire survey was given to 2 groups that included final year medical students and instructors in 16 Thai medical schools. The questionnaire covered 4 areas related to palliative care education. Results An insufficient proportion of students (defined as fewer than 60%) learned nonpain symptoms control (50.0%), goal ...
Background: Sleep disorders are frequent in patients with advanced cancer receiving palliative-care, especially in elderly patients (1). Sleep disorders during palliative-care may be related with anxiety, opioids related central-sleep apnoea or corticoids therapy between others (2). Our aim was to quantify the effectiveness of hypnotic medication in the sleep quality in advanced cancer receiving palliative-care elderly patients. Material and methods: A descriptive cross-sectional study was...
Hay, Casey M; Lefkowits, Carolyn; Crowley-Matoka, Megan; Bakitas, Marie A; Clark, Leslie H; Duska, Linda R; Urban, Renata R; Chen, Lee-May; Creasy, Stephanie L; Schenker, Yael
Early specialty palliative care is underused for patients with advanced gynecologic malignancies. We sought to understand how gynecologic oncologists' views influence outpatient specialty palliative care referral to help inform strategies for improvement. We conducted a qualitative interview study at 6 National Cancer Institute-designated cancer centers with well-established outpatient palliative care services. Between September 2015 and March 2016, 34 gynecologic oncologists participated in semistructured telephone interviews focused on attitudes, experiences, and preferences related to outpatient specialty palliative care. A multidisciplinary team analyzed transcripts using constant comparative methods to inductively develop a coding framework. Through an iterative, analytic process, codes were classified, grouped, and refined into themes. Mean (SD) participant age was 47 (10) years. Mean (SD) interview length was 25 (7) minutes. Three main themes emerged regarding how gynecologic oncologists view outpatient specialty palliative care: (1) long-term relationships with patients is a unique and defining aspect of gynecologic oncology that influences referral, (2) gynecologic oncologists value palliative care clinicians' communication skills and third-party perspective to increase prognostic awareness and help negotiate differences between patient preferences and physician recommendation, and (3) gynecologic oncologists prefer specialty palliative care services embedded within gynecologic oncology clinics. Gynecologic oncologists value longitudinal relationships with patients and use specialty palliative care to negotiate conflict surrounding prognostic awareness or the treatment plan. Embedding specialty palliative care within gynecologic oncology clinics may promote communication between clinicians and facilitate gynecologic oncologist involvement throughout the illness course.
Westerlund, Caroline; Tishelman, Carol; Benkel, Inger; Fürst, Carl Johan; Molander, Ulla; Rasmussen, Birgit H; Sauter, Sylvia; Lindqvist, Olav
The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region. Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.
Seow, Hsien; Bainbridge, Daryl; Brouwers, Melissa; Bryant, Deanna; Tan Toyofuku, Sue; Kelley, Mary Lou
Evidence has shown that, despite wide variation in models of care, community-based specialist palliative care teams can improve outcomes and reduce acute care use at end of life. The goal of this study was to explore similarities in care practices among effective and diverse specialist teams to inform the development of other community-based teams. Interviews with 78 providers and administrators from 11 distinct community-based specialist palliative care teams from Ontario, Canada were conducted. Interviews were audio-recorded, transcribed and analysed using an inductive approach to identify common themes. 3 key themes across all teams emerged. First, the distinct models of care were generally summarised into 3 models: primary care and specialist providers either collaborated by transferring, sharing or consulting in care. Second, teams explicitly or implicitly followed 7 common care practices related to: specialised expertise 24/7; intrateam communication; timeliness; physical symptom and psychosocial-spiritual management; education; peace and fulfilment; and advocacy for patient preferences. Third, all teams emphasised the importance of team building, even more than using clinical tools and processes. Despite wide variation in models of care among community-based specialist palliative care teams, this large qualitative study identified several common themes in care practices that can guide the development of other teams. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Groeneveld, E.I.; Cassel, J.B.; Bausewein, C.; Csikos, A.; Krajnik, M.; Ryan, K.; Haugen, D.F.; Eychmueller, S.; Gudat Keller, H.; Allan, S.; Hasselaar, J.G.J.; García-Baquero Merino, T.; Swetenham, K.; Piper, K.; Furst, C.J.; Murtagh, F.E.
BACKGROUND: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from
M R Rajagopal
Full Text Available Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. Aims: (1 Creation of minimum National Standards for Palliative Care for India. (2 Development of a tool for self-evaluation of palliative care organizations. (3 Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. Materials and Methods: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. Results: Forty-nine (57% palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. Conclusions: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.
Bajwah, Sabrina; Yorke, Janelle
The palliative care needs of people with interstitial lung disease (ILD) have recently been highlighted by the National Institute for Health and Care Excellence. All people with progressive ILD should receive best supportive care to improve symptom control and quality of life and where possible this should be evidence based. Deaths from ILD are increasing and deaths in hospital are more common compared to home. People with ILD experience a wide range of symptoms including breathlessness and cough. People living with ILD often suffer unmet physical and psychological needs throughout the disease journey. Few appropriately validated outcome measures exist for ILD which has hampered research on the longitudinal experience of symptoms and quality of life and the evaluation of interventions. Recent recommendations from the National Institute of Clinical Excellence promote the use of a new palliative care needs assessment tool. Use of a tool in busy respiratory clinics may help to highlight those requiring specialist input. Further research into the role of opioids, oxygen and neuromodulatory agents in symptom management are needed. In addition, exploration of breathlessness and case conference interventions in transitioning patients from the hospital to community settings is a priority. Further work is needed to identify a core set of validated ILD-specific patient-reported outcome measures for the robust evaluation of interventions.
Thoonsen, B.A.; Engels, Y.M.; Rijswijk, H.C.A.M. van; Verhagen, S.; Weel, C. van; Groot, M. de; Vissers, K.C.
BACKGROUND: According to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools predicting the optimal timing for initiating palliative care have been determined. AIM: The aim
Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.
Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…
Mousing, Camilla Askov; Timm, Helle; Lomborg, Kirsten
vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care and lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care...
José Elías García Sánchez
Full Text Available The worst misfortune that can befall an old, tormented and fearful boxing trainer is that the pupil he is training and of whom he is very fond should have a lesion as serious as a quadriplegia. This is the crux of the plot in Million Dollar Baby. A person who suffers a quadriplegia sees how most of her physical and sensorial abilities disappear and habitually suffers psychological disturbances requiring palliative medical care. Relatives are subjected to great stress and suffering. All these aspects are reflected, in general accurately, in the film.
Sandsdalen, Tuva; Hov, Reidun; Høye, Sevald; Rystedt, Ingrid; Wilde-Larsson, Bodil
It is necessary to develop palliative care to meet existing and future needs of patients and their families. It is important to include knowledge of patient preferences when developing high-quality palliative care services. Previous reviews have focused on patient preferences with regard to specific components of palliative care. There is a need to review research on patient's combined preferences for all elements that constitute palliative care. The aim of this study is to identify preferences for palliative care among patients in the palliative phase of their illness, by synthesizing existing research. Studies were retrieved by searching databases - the Cochrane Library, Medline, CINAHL, PsycINFO, Scopus and Sociological Abstracts - from 1946 to 2014, and by hand searching references in the studies included. A systematic mixed studies review was conducted. Two reviewers independently selected studies for inclusion and extracted data according to the eligibility criteria. Data were synthesized using integrative thematic analysis. The 13 qualitative and 10 quantitative studies identified included participants with different illnesses in various settings. Four themes emerged representing patient preferences for care. The theme 'Living a meaningful life' illustrated what patients strived for. The opportunity to focus on living required the presence of 'Responsive healthcare personnel', a 'Responsive care environment' and 'Responsiveness in the organization of palliative care'. The four themes may be useful for guiding clinical practice and measurements of quality, with the overall goal of meeting future needs and improving quality in palliative care services to suit patients' preferences. © The Author(s) 2015.
Harden, Karen; Price, Deborah; Duffy, Elizabeth; Galunas, Laura; Rodgers, Cheryl
Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care. . The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care. . This project had a pre-/post-test design to assess knowledge, attitudes, and behaviors at baseline and one month after implementation of an established education curriculum. The teaching strategy included one four-hour class for oncology RNs with topics about the definition of palliative care, pain and symptom management, and how to have palliative care conversations. . Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.
Minton, Mary E; Kerkvliet, Jennifer L; Mitchell, Amanda; Fahrenwald, Nancy L
Geographical disparities play a significant role in palliative and end-of-life care access. This study assessed availability of palliative and end of life (hospice) care in South Dakota. Grounded in a conceptual model of advance care planning, this assessment explored whether South Dakota health care facilities had contact persons for palliative care, hospice services, and advance directives; health care providers with specialized training in palliative and hospice care; and a process for advance directives and advance care planning. Trained research assistants conducted a brief telephone survey. Of 668 health care eligible facilities, 455 completed the survey for a response rate of 68 percent (455 out of 668). Over one-half of facilities had no specific contact person for palliative care, hospice services and advance directives. Nursing homes reported the highest percentage of contacts for palliative care, hospice services and advance directives. Despite a lack of a specific contact person, nearly 75 percent of facilities reported having a process in place for addressing advance directives with patients; slightly over one-half (53 percent) reported having a process in place for advance care planning. Of participating facilities, 80 percent had no staff members with palliative care training, and 73 percent identified lack of staff members with end-of-life care training. Palliative care training was most commonly reported among hospice/home health facilities (45 percent). The results of this study demonstrate a clear need for a health care and allied health care workforce with specialized training in palliative and end-of-life care.
McCaffrey, Nikki; Agar, Meera; Harlum, Janeane; Karnon, Jonathon; Currow, David; Eckermann, Simon
The aim of this study was to evaluate the cost-effectiveness of a home-based palliative care model relative to usual care in expediting discharge or enabling patients to remain at home. Economic evaluation of a pilot randomised controlled trial with 28 days follow-up. Mean costs and effectiveness were calculated for the Palliative Care Extended Packages at Home (PEACH) and usual care arms including: days at home; place of death; PEACH intervention costs; specialist palliative care service use; acute hospital and palliative care unit inpatient stays; and outpatient visits. PEACH mean intervention costs per patient ($3489) were largely offset by lower mean inpatient care costs ($2450) and in this arm, participants were at home for one additional day on average. Consequently, PEACH is cost-effective relative to usual care when the threshold value for one extra day at home exceeds $1068, or $2547 if only within-study days of hospital admission are costed. All estimates are high uncertainty. The results of this small pilot study point to the potential of PEACH as a cost-effective end-of-life care model relative to usual care. Findings support the feasibility of conducting a definitive, fully powered study with longer follow-up and comprehensive economic evaluation.
Sugimura, Ayumi; Ando, Shoko; Tamakoshi, Koji
To investigate the association between the type of support provided by nurses for dyspnoea and palliative care practice in Japan, a cross-sectional questionnaire survey was conducted in 2015. Of the 535 questionnaires sent to nurses working at 22 designated cancer hospitals, 344 were returned. The questionnaire assessed the demographic characteristics of the nurses, nursing support for dyspnoea, and palliative care practice measured by the 'Palliative care self-reported practices scale'. Multivariate analysis showed that the domains of palliative care practice influenced the provision of nursing support for patients with dyspnoea. In conclusion, palliative care practice is important for supporting patients with dyspnoea, and nurses should possess the requisite knowledge and skills to deliver this care appropriately.
clinicians and researchers conceptualise palliative care. It is suggested that a constellation of parameters: stage of disease (advanced or active, prospect of cure (little or none, and treatment goals (primarily quality of life may ultimately inform search strategies. This may be similarly true for chronic diseases, which share the inherent passage of time which marks them apart from acute, and therefore more readily identifiable, episodes of care.
Yamamoto, Ryo; Kizawa, Yoshiyuki; Nakazawa, Yoko; Morita, Tatsuya
In Japan, a nationwide palliative care education program for primary palliative care (the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education: PEACE) was established in 2008. Effective delivery of such programs relies on adequate evaluations of program efficacy; however, such an instrument does not exist. This study aimed to develop and validate a measurement tool to quantify knowledge level of physicians about broader areas of palliative care, by which the effect of an education program could be measured. We conducted a cross-sectional, anonymous, self-administered questionnaire survey with a group of 801 conveniently sampled physicians in October 2010. To examine the test-retest reliability of items and domains, the questionnaire was reissued two weeks after the first survey was completed. This study used psychometric methods, including item response theory, intraclass correlation coefficients, and known-group validity. The response rate was 54% (n=434). We included 33 items across the following 9 domains: (1) philosophy of palliative care, (2) cancer pain, (3) side effects of opioids, (4) dyspnea, (5) nausea and vomiting, (6) psychological distress, (7) delirium, (8) communication regarding palliative care, and (9) community-based palliative care. For these items, the intraclass correlation was 0.84 and the Kuder-Richardson Formula 20 (KR-20) test of internal consistency was 0.87. There was a significant difference in the scores between palliative care specialists and other physicians. We successfully validated a newly developed palliative care knowledge questionnaire to evaluate PEACE effectiveness (PEACE-Q). The PEACE-Q could be useful for evaluating both palliative care knowledge among physicians and education programs in primary palliative care.
Jun 25, 2015 ... Financial constraints, need for home visits and hospice were other challenges encountered. Conclusion: Palliative care ... Ojimadu and Okwuonu: Palliative care medicine in a tertiary hospital. Int J Med Biomed Res 2015;4(2):86- ... some challenges in the management of painful crisis associated with sickle ...
Method: This is a review article on of various policies and publications concerning Palliative care in Nigeria using different search engines such as Pubmed and Google. Conclusion: Palliative care implementation in Nigeria is still a work in progress with limited availability in health facilities in the country. Key words: ...
Lloyd-Williams, Mari; Field, David
Responses from 46 of 108 nurse educators in the United Kingdom indicated that diploma students received a mean of 7.8 hours and degree students 12.2 hours of palliative care training. Although 82% believed it should be a core component, 67% had difficulty finding qualified teachers. Palliative care knowledge was not formally assessed in most…
Methods: Literature review was conducted using HINARI and Google search engines. Publications on palliative care were identified using relevant keywords. Challenges encountered rendering palliative care in a tertiary hospital were enumerated and discussed. Results: There is knowledge and attitude gap with urgent ...
Background: Nurses play a major role all over the world in the palliative care team. Aim: The aim of this study was to ... The questionnaire sought information about the sociodemographic profile of respondents, their knowledge of definition and philosophy of palliative care among other things. Descriptive statistics was used ...
Full Text Available This essay is a reflection on the multidisciplinary team in palliative care, from the perspective of a final year MBBS student from the UK spending one month with an Indian pain and palliative care team at Institute Rotary Cancer Hospital (IRCH, AIIMS, New Delhi.
Riet Paap, J.C. van; Vernooij-Dassen, M.; Sommerbakk, R.; Moyle, W.; Hjermstad, M.J.; Leppert, W.; Vissers, K.; Engels, Y.
BACKGROUND: The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in
Full Text Available Introduction: Annually more than 27,000 persons die of cancer in the Czech Republic and the overall incidence of malignancies is still increasing. These data shows the need for affordable and good follow-up care especially for patients without any cancer treatment due to irreversible progression of tumor. Currently the outpatient palliative cancer care gets more into the forefront. Prerequisite for a well working outpatient palliative care is cooperation with general practitioners and home health care agencies. The purpose of the so called program of palliative cancer care is to guide a patient in palliative cancer care and to improve the cooperation among health care providers. Methods: During the period from January 2008 to October 2010 we evaluated in patient without any oncology treatment due to irreversible progression of tumor. Results: In palliative outpatient clinic we treated 446 patients, 119 of them received home care services with average length of 27.8 days. 77 patients died at home, 51 in health facilities and 41 in inpatient hospice care. Conclusion: We present pilot study focusing on outpatient palliative cancer care which shows the real benefit from early indication of palliative cancer care. This type of care allows patients to stay as long as possible at home among their close relatives.
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many
Sandman, Lars; Molander, Ulla; Benkel, Inger
Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.
Mathews, Kathryn; Curie, Marie; Finch, Jemma
To map the nature and extent of existing palliative care education activities. Data was gathered from questionnaires, face-to-face and telephone interviews, visiting palliative care teams across Mount Vernon Cancer Network and attendance at conferences, meetings and seminars. A comprehensive needs assessment for palliative care education within nursing homes was completed. The findings revealed inequality across the network with regard to education provision and uptake of palliative care services. Recruitment of overseas staff and a transient workforce were both cited as major difficulties in implementing education programmes. Funding of these programmes and responsibility for providing the education remain unclear. There was a real and urgent need for palliative care training in the network area and there was scope for a variety of approaches to be adopted to deliver the required training.
Spickermann, Maximilian; Lenz, Philipp
At the end of life patients with a life-limiting disease are often admitted to emergency departments (ED). Mostly, in the setting of an ED there may not be enough time to meet the needs for palliative care (PC) of these patients. Therefore, integration of PC into the ED offers a solution to improve their treatment. In the outpatient setting a cooperation between prehospital emergency services, the patient's general practitioner and specialized outpatient PC teams may allow the patient to die at home - this is what most patients prefer at the end of life. Furthermore, due to the earlier integration of PC after admission the hospital stay is shortened. Also the number of PC consultations may increase. Additionally, a screening of PC hneeds among all patients visiting the ED may be beneficial: to avoid not meeting existing PC needs and to standardize the need of PC consultation. An example for such a screening tool is the "Palliative Care and Rapid Emergency Screening" (P-CaRES). © Georg Thieme Verlag KG Stuttgart · New York.
Simon, Steffen T; Ramsenthaler, Christina; Bausewein, Claudia; Krischke, Norbert; Geiss, Gerlinde
Self-awareness of one's own reactions towards patients and their relatives is of paramount importance for all professionals in palliative care. 'Core attitude' describes the way in which a person perceives himself and the world, and forms the basis for his actions and thoughts. The aim of this study is to explore what core attitude means for palliative care professionals and whether there is a specific core attitude in palliative care. Qualitative study with 10 face-to-face in-depth interviews with experts in palliative care (nurses, physicians, social workers, psychologists, chaplain) in Germany. Core attitude in palliative care can be best described with the following three domains: 1) personal characteristics; 2) experience of care; and 3) competence in care. Authenticity is the most important characteristic of professionals, along with honesty and mindfulness. Core attitude primarily becomes apparent in the relationship with the patient. Perception and listening are key competences. The experts emphasized the universality of the core attitude in the care of ill people. They stressed the importance and relevance of teaching core attitudes in palliative care education. In the field of palliative care, core attitude consists predominately of authenticity, manifests itself in relationships, and requires a high degree of perceptiveness.
Fink, Regina M; Oman, Kathleen S; Youngwerth, Jeanie; Bryant, Lucinda L
Palliative care services are lacking in rural hospitals. Implementing palliative care services in rural and remote areas requires knowledge of available resources, specific barriers, and a commitment from the hospital and community. The purpose of the study was to determine awareness, knowledge, barriers, and resources regarding palliative care services in rural hospitals. A descriptive survey design used an investigator-developed needs assessment to survey 374 (40% response rate) health care providers (chief executive officers, chiefs of medical staff, chief nursing officers, and social worker directors) at 236 rural hospitals (communication techniques, and end-of-life care issues. Webinar and online courses were suggested as strategies to promote long distance learning. It is imperative for quality of care that rural hospitals have practitioners who are up to date on current evidence and practice within a palliative care framework. Unique challenges exist to implementing palliative care services in rural hospitals. Opportunities for informing rural areas focus around utilizing existing hospice resources and relationships, and favoring Web-based classes and online courses. The development of a multifaceted intervention to facilitate education about palliative care and cultivate palliative care services in rural settings is indicated.
Ferris, Frank D; Moore, Shannon Y; Callaway, Mary V; Foley, Kathleen M
The International Palliative Care Leadership Development Initiative (LDI) was a model demonstration project that aimed to expand the global network of palliative care leaders in low- and moderate-resource countries who are well positioned to apply their new leadership skills. Thirty-nine palliative medicine physicians from 25 countries successfully completed the two-year curriculum that included three thematic residential courses, mentorship, and site visits by senior global palliative care leaders and personal projects to apply their new leadership skills. The focus on self-reflection, leadership behaviors and practices, strategic planning, high-level communication, and teaching skills led to significant personal and professional transformation among the participants, mentors, and the LDI team. The resulting residential course curriculum and the personal leadership stories and biosketches of the leaders are now available open access at IPCRC.net. Already, within their first-year postgraduation, the leaders are using their new leadership skills to grow palliative care capacity through significant changes in policy, improved opioid/other medication availability, new and enhanced educational curricula and continuing education activities, and development/expansion of palliative care programs in their organizations and regions. We are not aware of another palliative care initiative that achieves the global reach and ripple effect that LDI has produced. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Molyneux, Elizabeth M; Lavy, Vicky; Bunn, Mary; Palmer, Zoe; Chiputula, Fred
There are too few palliative care services for children in resource poor countries. Health carers are overwhelmed with cases of acute illness that need their urgent attention, and chronically ill children with life-limiting diseases have been sidelined. The HIV epidemic in southern Africa revealed the huge needs in our own hospital, and in 2002, we started a hospital-based paediatric palliative care service. It was the first in Africa. We describe here how it developed and expanded in the ensuing years and how it has affected our staff, the children and their families in our care.
Silva, Rudval Souza da; Trindade, Géssica Sodré Sampaio; Paixão, Gilvânia Patrícia do Nascimento; Silva, Maria Júlia Paes da
to analyze the attributes, antecedents and consequents of the family conference concept. Walker and Avante's method for concept analysis and the stages of the integrative review process, with a selection of publications in the PubMed, Cinahl and Lilacs databases focusing on the family conference theme in the context of palliative care. the most cited antecedents were the presence of doubts and the need to define a care plan. Family reunion and working instrument were evidenced as attributes. With respect to consequents, to promote the effective communication and to establish a plan of consensual action were the most remarkable elements. the scarcity of publications on the subject was observed, as well as and the limitation of the empirical studies to the space of intensive therapy. Thus, by analyzing the attributes, antecedents and consequents of the concept it was possible to follow their evolution and to show their efficacy and effectiveness as a therapeutic intervention.
Kwekkeboom, Kristine L; Vahl, Cheryl; Eland, Joann
Currently, major deficiencies exist in undergraduate nursing education for end-of-life care. Nursing students report feeling anxious and unprepared to be with patients who are dying. A Palliative Care Companion program that allows undergraduate nursing students to volunteer to spend time with patients at the end of life provides a unique educational opportunity to enhance students' knowledge and attitudes toward palliative care. In addition, the program offers a service to patients and families by providing a nonmedical, caring human presence to patients who may be alone, lonely, or bored. In accordance with tenets of Experiential Learning Theory, a Palliative Care Companion program was developed and revised using feedback from initial participants and facilitators. Data collected during the first two semesters indicated increased knowledge of palliative care, improved attitudes about care at the end of life, and fewer concerns about providing nursing care to dying patients, when participating students were compared to their undergraduate peers.
Palliative care is not a luxury in developing countries. This article challenges the assumption that money spent on the care of people who are terminally ill cannot be justified in the face of many competing claims. The absence of screening and diagnostic services, combined with a cultural reluctance to seek help, frequently results in patients presenting at a late stage in the natural history of their disease. Pain and symptom relief remain the only options. In developing countries, the health care systems and social networks are often inadequate to support terminally ill members of society and it is argued that palliative care home teams would provide the ideal model of care. Palliative care's eligibility for inclusion in the health care budget of Kenya is demonstrated in this article and the difficulties it is facing in other developing countries are described. A case history seeks to show the necessity of palliative care in these areas of the world.
Horowitz, Robert; Gramling, Robert; Quill, Timothy
Medical educators in the U.S.A. perceive the teaching of palliative care competencies as important, medical students experience it as valuable and effective, and demographic and societal forces fuel its necessity. Although it is encouraged by the Association of American Medical Colleges, the only palliative care-related mandate in U.S. medical schools is the Liaison Committee on Medical Education directive that end-of-life (EoL) care be included in medical school curricula, reinforcing the problematic conflation of EoL and palliative care. A review of US medical school surveys about the teaching of palliative and EoL care reveals varied and uneven approaches, ranging from 2 hours in the classroom on EoL to weeks of palliative care training or hospice-based clinical rotations. Palliative care competencies are too complex and universally important to be relegated to a minimum of classroom time, random clinical exposures, and the hidden curriculum. Given the reality of overstrained medical school curricula, developmentally appropriate, basic palliative care competencies should be defined and integrated into each year of the medical school curriculum, taking care to circumvent the twin threats of curricular overload and educational abandonment. © 2013 John Wiley & Sons Ltd.
Abu-Saad Huijer, Huda; Dimassi, Hani; Abboud, Sarah
Our objective was to determine the knowledge, attitudes, and practices of physicians and nurses on Palliative Care (PC) in Lebanon, across specialties. We performed a cross-sectional descriptive survey using a self-administered questionnaire; the total number of completed and returned questionnaires was 868, giving a 23% response rate, including 74.31% nurses (645) and 25.69% physicians (223). Significant differences were found between medical and surgical nurses and physicians concerning their perceptions of patients' and families' outbursts, concerns, and questions. Knowledge scores were statistically associated with practice scores and degree. Practice scores were positively associated with continuing education in PC, exposure to terminally ill patients, and knowledge and attitude scores. Acute critical care and oncology were found to have lower practice scores than other specialties. Formal education in palliative care and development of palliative care services are very much needed in Lebanon to provide holistic care to terminally ill patients.
Isaacson, Mary; Karel, Beth; Varilek, Brandon M; Steenstra, Whitney J; Tanis-Heyenga, Jordan P; Wagner, Amanda
Palliative care options are limited for Native Americans (NA) in South Dakota (SD). This exploratory study offers the perspectives of Native and non-Native health care professionals regarding palliative care specific to NAs. Semi-structured interviews were conducted (N = 7) with participants representing NA (4) and non-Native (3) ethnicities. Non-Native participants were practicing health care professionals in palliative medicine, whereas the NA health care professionals had experience with palliative care. Concept analysis revealed two main themes and five subthemes: (a) barriers to palliative care, for example, insufficient funding, lack of infrastructure, and misconceptions; and (b) implementation strategies, for example, openness and listening and creating the right team. Genuine interest and concern exists for the provision of palliative care to NA communities using collaborative and innovative approaches. To address the health disparities of the NA population specific to palliative care, public health policy reform and education for health professionals are necessary. © The Author(s) 2014.
Ramjan, John M; Costa, Catherine M; Hickman, Louise D; Kearns, Margot; Phillips, Jane L
The majority of society's deaths occur in a health care environment. Regardless of whether a death occurs in acute care, hospice, residential aged care or community settings, nurses are the health professionals that will spend the largest proportion of time with the patient who has a terminal condition and their families. As few nurses have specialist palliative care qualifications it is essential that nursing education prepares graduates to achieve the core capabilities required for the delivery of best evidenced based palliative care. This reality makes the integration of palliative care content into the undergraduate nursing curricula an important priority. This paper aims to describe how palliative care content has been embedded throughout the three-year University of Notre Dame Australia, Sydney (UNDA) undergraduate nursing degree. The School of Nursing at the University of Notre Dame Australia, Sydney campus is committed to ensuring that students graduate with the capabilities to deliver appropriate care to people with requiring end-of-life care. The establishment of this new School of Nursing coincided with the release of the 'The Palliative Care Curricula for Undergraduates Program' (PCC4U) learning resources. These resources have been integrated into relevant units across the three-year nursing curricula. The nursing curriculum has been design to supports the integration of palliative care knowledge into clinical practice. The Palliative Care Curricula for Undergraduates Program Learning resources offer engaging palliative care case studies and scenarios for academics to utilise. Adopting an iterative approach where palliative care content is spiralled across multiple units provides opportunities for undergraduate nursing students to sequentially build and consolidate their palliative care capabilities. Developing a new curricular provided an ideal opportunity to integrate and embed palliative care content into the undergraduate nursing degree. The next
Patients living with chronic heart failure (CHF) often have poor quality of life and similar symptoms as patients with cancer. Despite this, these patients receive less specialist palliative care. Some of the major barriers in providing high-quality care for end stage CHF patients are the conflicting conceptualization of palliative care among health care professionals as a system of care delivery at the terminal phase of the illness versus philosophy of care introduced early in conjunction with life-prolonging treatments, the unpredictable nature of the illness trajectory, lack of knowledge among acute care nurses about palliative care and lack of communication with patients and their families. The aim of this article is to identify evidence-based strategies and frameworks that would aid nurses and other health care professionals in the integration of palliative care into the care path of CHF patients.
Hurst, Samia A; Mauron, Alex
The ethical underpinnings of palliative care and those of voluntary euthanasia and assisted suicide (VE/AS) are often viewed as opposites. In this article, we review the values held in common by the euthanasia legalization movement and palliative care providers. Outlining this common ground serves to define, with greater clarity, the issues on which differences do exist, and ways in which some open questions, which are as yet unresolved, could be approached. Open discussion between VE/AS legalization advocates and palliative care providers is important to address these open questions seriously, and to enrich the care of terminally ill patients by giving members of both groups access to each other's experience.
I. P. Рonomareva
Full Text Available The purpose of the study is to identify the main problems and prospects of development of palliative care in geriatrics at the present stage. Method of research was to analyze the printed and electronic databases that meet the stated issues. The results of the study highlight the problems of the development of palliative care in geriatric practice: the lack of a developed procedure of rendering palliative care and adequate elderly patient selection criteria, the lack of trained professional staff. The main prospects-association of palliative practices and concepts of modern geriatrics required specialized geriatric assessment and the provision of clinical, medical, social and socio-psychological geriatric syndromes. While promising option for the development of palliative care geriatrics is the integration into the existing health care system, acceptance of the fact that it is a part of the specialized geriatric care. This requires the involvement and training of not only specialists with medical education, but also persons without medical training from among social workers and volunteers working in palliative care. Therefore, the obtained data allowed to conclude that topical is the development of palliative care in geriatrics, taking into account not only clinical but medico-social, socio-psychological features.
Roberts, Della; Gaspard, Gina
Dementia is a progressive, life-limiting illness. People with the condition who move into a care home deserve palliative care. This article discusses an interprofessional pilot workshop for direct care providers held in a care home in British Columbia, Canada. The workshop aimed to incorporate a palliative approach into dementia care for residents. Workshop development, teaching strategies, evaluation and outcomes are shared. The four-hour workshop was structured to promote critical reflection and challenge participants to consider that people with dementia and their families need palliative care much earlier than during the last days of life. Commitment to change statements gathered as part of the workshop indicated that participation increased knowledge, skill and confidence to incorporate a palliative approach into care for people with advanced dementia and their families.
Lopes Ferreira, Pedro; Pinto Barros, Ana; Barros Brito, Ana
This paper describes the process followed to create and validate the Portuguese versión of a quality of life measurement instrument for patients in palliative care. After a literature review about the measurement of the quality of life in this particular and very specific kind of patients, we opt by the Irene Higginson's measurement instrument called Palliative Care Outcome Scale (POS). It has been selected as the one most appropriate to Portuguese patients' reality. For the creation of the Portuguese version we followed the recommended methodologies for the forward-backward translations. These methodologies allow us to determine semantic and linguistic equivalences of health outcomes measurement instruments. The validation was performed on a sample of 104 cancer patients aged between 40 and 85 years old. 70% were female, 29% had lung cancer, 46% breast cáncer and 22% had melanoma. Content validity was assured by two cognitive debriefing tests, respectively performed in oncologists and in patients. Construct validation allow us to find five ortogonal factors, including 'emotional well being' (19.7% of variance explained), 'consequences of the disease in life' (18.2%), 'received information and support' (11.7%), 'anxiety' (10.1%), and 'burden of illness' (9.8%). Criterion validity was tested by comparing the results obtained by POS to the ones obtained by the EORTC QLQ-C30, a genetic instrument especially designed for cancer patients. The found correlation values were moderated to strong and ranged from 0.51 to 0.63. The reliability of the Portuguese version was assured through the reproducibility test and the search for the internal consistency. The scores obtained by a one-week testrestest ranged from 0.66 to 1.00. Cronbach's alpha was 0.68, acceptable and allowing us to consider POS as a unique index Time responsiveness and diagnosis responsiveness were also analysed. Comparing values measured with a one-month interval showed sensibility to the lack of the
Dréano-Hartz, Soazic; Rhondali, Wadih; Ledoux, Mathilde; Ruer, Murielle; Berthiller, Julien; Schott, Anne-Marie; Monsarrat, Léa; Filbet, Marilène
Burnout syndrome is a work-related professional distress. Palliative care physicians often have to deal with complex end-of-life situations and are at risk of presenting with burnout syndrome, which has been little studied in this population. Our study aims to identify the impact of clinical settings (in a palliative care unit (PCU) or on a palliative care mobile team (PCMT)) on palliative care physicians. We undertook a cross-sectional study using a questionnaire that included the Maslach Burnout Inventory (MBI), and we gathered sociodemographic and professional data. The questionnaire was sent to all 590 physicians working in palliative care in France between July of 2012 and February of 2013. The response rate was 61, 8% after three reminders. Some 27 (9%) participants showed high emotional exhaustion, 12 (4%) suffered from a high degree of depersonalization, and 71 (18%) had feelings of low personal accomplishment. Physicians working on a PCMT tended (p = 0.051) to be more likely to suffer from emotional exhaustion than their colleagues. Physicians working on a PCMT worked on smaller teams (fewer physicians, p burnout in palliative care physicians was low and in fact lower than that reported in other populations (e.g., oncologists). Working on a palliative care mobile team can be a more risky situation, associated with a lack of medical and paramedical staff.
Hudson, Peter; Street, Annette; Graham, Suzanne; Aranda, Sanchia; O'Connor, Margaret; Thomas, Kristina; Jackson, Kate; Spruyt, Odette; Ugalde, Anna; Philip, Jennifer
The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration. Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research. Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan. The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.
Goldschmidt, Dorthe; Groenvold, Mogens; Johnsen, Anna Thit
BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one...... month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced...... by 91 %, mainly due to improvement in symptom management, 'security', and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory...
Legalisation of physician-assisted dying (PAD) remains a highly contested issue. In the Australasian context, the opinion and perspective of palliative care specialists have not been captured empirically, and are required to inform better the debate around this issue, moving forward. To identify current attitudes and experiences of palliative care specialists in Australasia regarding requests for physician-assisted suicide and voluntary euthanasia, and to capture the opinion of palliative care specialists on the legalisation of these practices in the Australasian context. An anonymous, cross-sectional, online survey of Australasian specialists in palliative care, addressing the following six areas: (i) demographics; (ii) frequency of requests, and response given; (iii) understanding of the term 'voluntary euthanasia'; (iv) opinion regarding legalisation of physician-assisted suicide and voluntary euthanasia in Australasia, and willingness to participate if legal; (v) identification of the most important values guiding this opinion; and (vi) anticipated impact that legalisation of assisted death would have on palliative care practice. Important findings include: (i) palliative care specialists are largely opposed to the legalisation of PAD; (ii) the proportional titration of opioids is not understood by any palliative care specialist studied to be 'voluntary euthanasia'; and (iii) there is a wide variation in frequency of requests, and one-third of palliative care specialists express discomfort in dealing with requests for assisted suicide or euthanasia. Key areas for future research at the interface between PAD and best practice end-of-life care are identified, including exploration into why palliative care specialists are largely opposed to PAD, and consideration of the impact 'the opioid misconception' may have on the literature informing this debate. © 2016 Royal Australasian College of Physicians.
Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss Em
Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. To assess national models and methods for financing and reimbursing palliative care. Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.
Abernethy, Amy P; Capell, Warren H; Aziz, Noreen M; Ritchie, Christine; Prince-Paul, Maryjo; Bennett, Rachael E; Kutner, Jean S
Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in applying standard ethical principles and terms-in a specific way-to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work. Copyright © 2014 American Academy of Hospice and Palliative Medicine. All rights reserved.
Full Text Available The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1 exposing uncertainty, (2 co-constructing patient preferences, (3 affirming patient autonomy, and finally (4 upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to
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.
Karkada, Suja; Nayak, Baby S; Malathi
The goal of palliative care is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. The knowledge of nurses influences the quality of care provided to these patients. The present study aimed at identifying the level of knowledge and attitude of nursing students who are the future caretakers of patients, which helps to make recommendations in incorporating palliative care concepts in the nursing curriculum. (1) To assess the level of knowledge of nursing students on palliative care; (2) To identify the attitude of nursing students towards palliative care; (3) To find the correlation between the knowledge and attitude of nursing students; (4) To find the association between nursing students' knowledge, attitude and selected demographic variables. A correlative survey was carried out among 83 third-year Diploma Nursing students by using cluster sampling method from selected nursing schools of Udupi district. The data analyzed showed that the majority (51%) of them was in the age group of 21years and 92% of them were females. Only 43.4% of them were aware of the term palliative care and it was during their training period. The data showed that 79.5% of students had poor knowledge (6.4± 1.64) on palliative care and 92.8% of them had favorable attitude (56.7± 8.5) towards palliative care. The chi-square showed a significant association between knowledge and age (χ(2)=18.52,Pnursing students. Palliative care aspects should be incorporated in the diploma nursing curriculum.
Full Text Available Background: The goal of palliative care is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. The knowledge of nurses influences the quality of care provided to these patients. The present study aimed at identifying the level of knowledge and attitude of nursing students who are the future caretakers of patients, which helps to make recommendations in incorporating palliative care concepts in the nursing curriculum. Objectives: (1 To assess the level of knowledge of nursing students on palliative care; (2 To identify the attitude of nursing students towards palliative care; (3 To find the correlation between the knowledge and attitude of nursing students; (4 To find the association between nursing students′ knowledge, attitude and selected demographic variables. Materials and Methods: A correlative survey was carried out among 83 third-year Diploma Nursing students by using cluster sampling method from selected nursing schools of Udupi district. Results: The data analyzed showed that the majority (51% of them was in the age group of 21years and 92% of them were females. Only 43.4% of them were aware of the term palliative care and it was during their training period. The data showed that 79.5% of students had poor knowledge (6.4± 1.64 on palliative care and 92.8% of them had favorable attitude (56.7± 8.5 towards palliative care. The chi-square showed a significant association between knowledge and age (χ2 =18.52,P<0.01 of the nursing students. Conclusion: Palliative care aspects should be incorporated in the diploma nursing curriculum.
Full Text Available A general descrition of the initiation of a palliative care program in Kenya using a transformational development, participatory and empowering approach, with lessons learned and description of subsequent impact.
Palliative care for children in pediatric hospitals is a vital part of the network of services supporting children with severe illness. This has been recognized, with a trend over the past decade for an increased number of pediatric palliative care (PPC) services established in pediatric hospitals. The inpatient team is in the unique position of influencing the early identification of children and their families, across the age and diagnostic spectrum, which could benefit from palliative care. These services have an opportunity to influence the integration of the palliative approach throughout the hospital, and in so doing, have the capacity to improve many aspects of care, including altering an increasingly futile and burdensome treatment trajectory, and ensuring improved symptom (physical and psychological) management.
Carter, Brian S
Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia. © The Author(s) 2014.
Using communication skills for difficult conversations in palliative care: 'Suffering is not a question which demands an answer, It is not a problem which demands a solution, It is a mystery which demands a “Presence”.' (Anonymous)
Nisha Rani Jamwal
Full Text Available Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers' necessities and patients' biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care.
Rani P Mol
Full Text Available The palliative doctor gives the ′touch of God′ as he/she takes care of the terminally ill patient. The oncologist encounters great difficulties in managing oral cavity problems of these patients. A trained dental doctor can help other doctors in dealing with these situations. But the general dental surgeon does not have enough idea about his part in these treatments. The community is also unaware of the role that a nearby dentist can play. Adequate training programs have to be conducted and awareness has to be created. A trained dentist will be a good team mate for the oncologist or radiotherapist or other doctors of the palliative care team. In this paper, a brief attempt is made to list a few areas in which a palliative care dentist can help other members of the palliative care team and also the patient in leading a better life.
Lawton, S; McKie, A
This case study outlines a staff seminar programme that used art and literature as vehicles to explore personal and professional dimensions of palliative care. Participating staff found the learning experience interesting and insightful.
Gibbins, Jane; McCoubrie, Rachel; Maher, Jane; Forbes, Karen
It is well recognised that teaching about palliative care, death and dying should begin at undergraduate level. The General Medical Council in the UK has issued clear recommendations for core teaching on the relieving of pain and distress, and care for the terminally ill. However, whereas some medical schools have incorporated comprehensive teaching programmes, others provide very little. The reasons underpinning such variability are unknown. The aim of this study was to explore the factors that help or hinder the incorporation of palliative care teaching at undergraduate level in the UK. Semi-structured interviews were carried out with a purposive sample of coordinators of palliative care teaching in 14 medical schools in the UK. Transcribed interviews were analysed using principles of grounded theory and respondent validation. There are several factors promoting or inhibiting palliative care teaching at undergraduate level that are common to the development of teaching about any specialty. However, this study also revealed several factors that are distinctive to palliative care. Emergent themes were 'need for an individual lead or champion', 'the curriculum', 'patient characteristics and exposure', 'local colleagues and set-up of service', 'university support' and 'the influence of students'. The incorporation of palliative care into the medical undergraduate curriculum involves a complex process of individual, institutional, clinical, patient and curricular factors. These new findings could help medical schools to incorporate or improve such teaching.
Gelfman, Laura P; Kavalieratos, Dio; Teuteberg, Winifred G; Lala, Anuradha; Goldstein, Nathan E
Heart failure (HF) is a chronic and progressive illness, which affects a growing number of adults, and is associated with a high morbidity and mortality, as well as significant physical and psychological symptom burden on both patients with HF and their families. Palliative care is the multidisciplinary specialty focused on optimizing quality of life and reducing suffering for patients and families facing serious illness, regardless of prognosis. Palliative care can be delivered as (1) specialist palliative care in which a palliative care specialist with subspecialty palliative care training consults or co-manages patients to address palliative needs alongside clinicians who manage the underlying illness or (2) as primary palliative care in which the primary clinician (such as the internist, cardiologist, cardiology nurse, or HF specialist) caring for the patient with HF provides the essential palliative domains. In this paper, we describe the key domains of primary palliative care for patients with HF and offer some specific ways in which primary palliative care and specialist palliative care can be offered in this population. Although there is little research on HF primary palliative care, primary palliative care in HF offers a key opportunity to ensure that this population receives high-quality palliative care in spite of the growing numbers of patients with HF as well as the limited number of specialist palliative care providers.
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
Diehl-Schmid, J; Riedl, L; Rüsing, U; Hartmann, J; Bertok, M; Levin, C; Hamann, J; Arcand, M; Lorenzl, S; Feddersen, B; Jox, R J
As a result of a literature-based expert process, this review provides an overview about the principles of palliative care for people with advanced dementia that are relevant for clinical practice. In particular, the indications, impact and aims of palliative care for advanced dementia are described. Life-prolonging measures and management of symptoms at the end of life are discussed. Furthermore, the overview focuses on the legal basis of decision making.
Huynh, Lise; Henry, Blair; Dosani, Naheed
Background With an ever increasing number of individuals living with chronic and terminal illnesses, palliative care as an emerging field is poised for unprecedented expansion. Today?s rising recognition of its key role in patients? illnesses has led to increased interest in access to palliative care. It is known that homelessness as a social determinant of health has been associated with decreased access to health resources in spite of poorer health outcomes and some would argue, higher need...
Goldschmidt, Dorthe; Groenvold, Mogens; Johnsen, Anna Thit
BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one...... month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced....... Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance...
Blackford, Jeanine; Street, Annette F
This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations.
van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Sommerbakk, Ragni; Moyle, Wendy; Hjermstad, Marianne J; Leppert, Wojciech; Vissers, Kris; Engels, Yvonne
The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care. Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy. From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies). This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care.
The prevalence of psychiatric disorders in palliative care is well documented, yet they often remain undetected and untreated, adding further to the burden of suffering on patients who are already facing severe physical and psychosocial problems. This article will focus on depression as it represents one of the most common psychiatric disorders treated by psychiatrists and psychotherapists in palliative care. Although depression in palliative care can be treated successfully with antidepressant medication and psychotherapy, a significant number of depressives do not respond to either medication or existing psychotherapies. This is not surprising considering depression is a complex disorder. Moreover, the presentation of depression in palliative care is compounded by the severity of the underlying medical conditions. It is thus important for clinicians to continue to develop more effective treatments for depression in palliative care. This article describes cognitive hypnotherapy (CH), an evidence-based multimodal treatment for depression which can be applied to a wide range of depressed patients in palliative care. CH, however, does not represent a finished product; it is a work in progress to be empirically validated and refined by advances in cancer and clinical depression.
Jiang, Xuan; Liao, Zhongli; Hao, Jia; Guo, Ying; Zhou, Yuanyuan; Ning, Linhong; Bai, Jianying; Zhang, Pengbin; Tang, Chunlin; Zhao, Xiaoyan; Guo, Hong
There has been an increase in the amount of palliative care available in developing countries, including in China. However, palliative care is still very limited, and it is not mandatory to teach courses on palliative care in Chinese medical universities. To assess Chinese interns' awareness of palliative care concepts. Using a questionnaire selected from an earlier Austrian study, interns in a Chinese medical university were surveyed. All those surveyed had already been interns for at least six months. Four hundred interns from a Chinese medical university (response rate 99.5%) were surveyed. Twenty-one percent were female (84 of 400), and the average age was 23 years. Approximately one-third (34.5%) of interns were familiar with the pain scale, and 31% of interns were familiar with the concept of pain management. Only 7.5% of interns felt adequately trained in basic pain management, and 13% felt adequately trained to manage symptoms of dying patients. Seventy-seven percent of interns reported inadequate education regarding discussion of death with patients and family members. More than 80% of interns felt that more education about palliative care should be included in the basic medical curriculum and clinical intern training. Palliative care education is inadequate from the perspective of the Chinese medical interns. An improvement in the medical school curriculum is needed. Copyright © 2011 U.S. Cancer Pain Relief Committee. All rights reserved.
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
Putranto, Rudi; Mudjaddid, Endjad; Shatri, Hamzah; Adli, Mizanul; Martina, Diah
To summarize the current status of palliative care and the role of psychosomatic medicine in Indonesia. Palliative care is not a new issue in Indonesia, which has been improving palliative care since 1992 and developed a palliative care policy in 2007 that was launched by the Indonesian Ministry of Health. However, the progress has been slow and varied across the country. Currently, palliative care services are only available in a few major cities, where most of the facilities for cancer treatment are located. Psychosomatic medical doctors have advantages that contribute to palliative care because of their special training in communication skills to deal with patients from the standpoints of both mind and body. Palliative care services in Indonesia are established in some hospitals. Future work is needed to build capacity, advocate to stakeholders, create care models that provide services in the community, and to increase the palliative care workforce. Psychosomatic medicine plays an important role in palliative care services.
Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo
The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities
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.
Klarare, Anna; Hagelin, Carina Lundh; Fürst, Carl Johan; Fossum, Bjöörn
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. The aim was to explore team interaction among team members in specialized palliative care teams. Semistructured interviews were conducted with health professionals working in specialized palliative home care teams. The interviews were analyzed by content analysis. Participants were recruited from specialized palliative care units in Sweden. The 15 interviewees included 4 men and 11 women. Physcians, nurses, paramedical staff, and social workers were included. Organizational issues like resources and leadership have a great impact on delivery of care. Competence was mirrored in education, collaboration, approach, and support within the team; while communication was described as key to being a team, resolving conflict, and executing palliative care. Communication and communication patterns within the team create the feeling of being a team. Team climate and team performance are significantly impacted by knowledge and trust of competence in colleagues, with other professions, and by the available leadership. Proportions of different health professionals in the team have an impact on the focus and delivery of care. Interprofessional education giving clarity on one's own professional role and knowledge of other professions would most likely benefit patients and family caregivers.
Chapman, Michael; Johnston, Nikki; Lovell, Clare; Forbat, Liz; Liu, Wai-Man
Specialist palliative care is not a standardised component of service delivery in nursing home care in Australia. Specialist palliative care services can increase rates of advance care planning, decrease hospital admissions and improve symptom management in such facilities. New approaches are required to support nursing home residents in avoiding unnecessary hospitalisation and improving rates of dying in documented preferred place of death. This study examined whether the addition of a proactive model of specialist palliative care reduced resident transfer to the acute care setting, and achieved a reduction in hospital deaths. A quasi-experimental design was adopted, with participants at 4 residential care facilities. The intervention involved a palliative care nurse practitioner leading 'Palliative Care Needs Rounds' to support clinical decision-making, education and training. Participants were matched with historical decedents using propensity scores based on age, sex, primary diagnosis, comorbidities and the Aged Care Funding Instrument rating. Outcome measures included participants' hospitalisation in the past 3 months of life and the location of death. The data demonstrate that the intervention is associated with a substantial reduction in the length of hospital stays and a lower incidence of death in the acute care setting. While rates of hospitalisation were unchanged on average, length of admission was reduced by an average of 3.22 days (pcare service delivery in residential facilities. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Margaret I Fitch
Full Text Available Caring for individuals at the end of life in the hospital environment is a challenging proposition. Understanding the challenges to provide quality end of life care is an important first step in order to develop appropriate approaches to support and educate staff members and facilitate their capacity remaining "caring." Four studies were undertaken at our facility to increase our understanding about the challenges health professionals experience in caring for patients at end of life and how staff members could be supported in providing care to patients and families: (1 In-depth interviews were used with cancer nurses (n = 30 to explore the challenges talking about death and dying with patients and families; (2 Surveys were used with nurses (n = 27 and radiation therapists (n = 30 to measure quality of work life; (3 and interprofessional focus groups were used to explore what it means "to care" (five groups held; and (4 interprofessional focus groups were held to understand what "support strategies for staff" ought to look like (six groups held. In all cases, staff members confirmed that interactions concerning death and dying are challenging. Lack of preparation (knowledge and skill in palliative care and lack of support from managers and colleagues are significant barriers. Key strategies staff members thought would be helpful included: (1 Ensuring all team members were communicating and following the same plan of care, (2 providing skill-based education on palliative care, and (3 facilitating "debriefing" opportunities (either one-on-one or in a group. For staff to be able to continue caring for patients at the end of life with compassion and sensitivity, they need to be adequately prepared and supported appropriately.
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
Heins, M.J.; Hofstede, J.; Rijken, P.M.; Korevaar, J.C.; Donker, G.A.; Francke, A.L.
Background: Many patients with advanced cancer receive palliative care from a GP and homecare nurse. Care for physical/psychosocial well-being, respect for patients’ autonomy and information provision are important elements of palliative care, but it is not known whether patients receive the care
Conclusion: Oncologists, oncology nurses, and patients felt that integration of early specialist palliative care in cancer improves symptom control, end-of-life care, health-related communication, and continuity of care. The perceptions of benefit of the palliative care intervention in the components surveyed, differed among the three groups.
Palliative care does not attempt to prolong survival but to the achieve the highest quality of life both for the patient and their family covering their physical, psychological, social and spiritual needs. Radiotherapy (RT), one of the most important therapeutic modalities, has a great significance in palliative medicine for cancer since it attempts to reduce as much as possible the acute reaction associated with the treatment for the patient. (Author)
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
Ryan, Tony; Gardiner, Clare; Bellamy, Gary; Gott, Merryn; Ingleton, Christine
The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care. This paper reports on qualitative research conducted in the UK that sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia. Eight focus groups and four individual interviews were held. Data were analysed using a thematic approach. The study included palliative care practitioners (n = 58) including medical, nursing and allied health professionals. Participants were recruited from acute hospitals, general practice, hospices and specialist palliative care units in the UK. Four themes were identified: Making the transition; Competence challenged; 'The long view' and Working together. Whilst there exists good practice in this area, the barriers to timely and appropriate transitions to palliative care for people with dementia and their families continue to exist. The paper concludes with recommendations for policy and practice development.
Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia; Yates, Patsy; Hardy, Janet
Nurses play a pivotal role in caring for patients during the transition from life-prolonging care to palliative care. This is an area of nursing prone to emotional difficulty, interpersonal complexity, and interprofessional conflict. It is situated within complex social dynamics, including those related to establishing and accepting futility and reconciling the desire to maintain hope. Here, drawing on interviews with 20 Australian nurses, we unpack their accounts of nursing the transition to palliative care, focusing on the purpose of nursing at the point of transition; accounts of communication and strategies for representing palliative care; emotional engagement and burden; and key interprofessional challenges. We argue that in caring for patients approaching the end of life, nurses occupy precarious interpersonal and interprofessional spaces that involve a negotiated order around sentimental work, providing them with both capital (privileged access) and burden (emotional suffering) within their day-to-day work. © The Author(s) 2014.
Álvarez-Cordovés, M M; Mirpuri-Mirpuri, P G; Gonzalez-Losada, J; Chávez-Díaz, B
We present a case of a patient diagnosed with glioblastoma multiforme refractory to treatment. Glioblastoma multiforme is the most common primary brain tumour and unfortunately the most aggressive, with an estimated mortality of about 90% in the first year after diagnosis. In our case the patient had reached a stage of life where quality of life was importsnt, with palliative care being the only recourse. The family is the mainstay in the provision of care of terminally ill patients, and without their active participation it would be difficult to achieve the objectives in patient care. We must also consider the family of the terminally ill in our care aim, as its members will experience a series of changes that will affect multiple areas where we should take action. Copyright © 2012 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España. All rights reserved.
Full Text Available Abstract Background Palliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim of this study was to develop the first targets for public health initiatives to improve palliative care in Germany. Methods Based on the findings from pilot studies (qualitative interviews and surveys with different stakeholders in the health care system, we conducted a modified Delphi study with two rounds of questionnaires with experts in public health and palliative care. In the first round, the experts commented on the findings from the pilot studies. The answers were evaluated descriptively and with qualitative content analysis, resulting in the formulation of 25 targets. These were presented to the experts in the second Delphi round to assess each of them separately with regard to its importance and current implementation (7-point answer scales and in relation to the other targets (defining the five most important of the 25 targets. Results Six most relevant targets for public health initiatives to improve palliative care in Germany were worked out: Supporting palliative care as a basic attitude for the care of people in the last phase of life; coordinating healthcare for people in the last phase of life; establishing cooperation among health professions and disciplines; establishing education in palliative care for all professional groups with contact to people in the last phase of life; reviewing the evidence of palliative care measures; offering support to family members who are caring for someone in the last phase of life. Conclusions To systematically develop palliative care, it makes sense to define fields of action
Schneider, Nils; Lueckmann, Sara L; Kuehne, Franziska; Klindtworth, Katharina; Behmann, Mareike
Palliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim of this study was to develop the first targets for public health initiatives to improve palliative care in Germany. Based on the findings from pilot studies (qualitative interviews and surveys with different stakeholders in the health care system), we conducted a modified Delphi study with two rounds of questionnaires with experts in public health and palliative care. In the first round, the experts commented on the findings from the pilot studies. The answers were evaluated descriptively and with qualitative content analysis, resulting in the formulation of 25 targets. These were presented to the experts in the second Delphi round to assess each of them separately with regard to its importance and current implementation (7-point answer scales) and in relation to the other targets (defining the five most important of the 25 targets). Six most relevant targets for public health initiatives to improve palliative care in Germany were worked out: Supporting palliative care as a basic attitude for the care of people in the last phase of life; coordinating healthcare for people in the last phase of life; establishing cooperation among health professions and disciplines; establishing education in palliative care for all professional groups with contact to people in the last phase of life; reviewing the evidence of palliative care measures; offering support to family members who are caring for someone in the last phase of life. To systematically develop palliative care, it makes sense to define fields of action with individual targets. For Germany, it can be recommended to give
Full Text Available Background. In the last decades a palliative care has been well established in the majority of West European countries. However, majority of these countries are not able to follow needs for palliative care because of demographic changes (older population, changes of morbidity pattern (increase of chronic progressive diseases and social changes (disability of families to care for their relatives at their homes. Research is showing evidence on palliative care effectiveness at end of life and in bereavement. There is still a great need for healthcare professionals’ change in their attitudes, knowledge and skills. In many National strategic plans (United Kingdom, Ireland, Sweden, Australia, New Zealand and Canada palliative care becomes a priority in the national public health. New organizational planning supports establishement of palliative care departments in hospitals and other healthcare settings and consultant teams at all levels of healthcare system. Hospices, caritative and independent organizations, will remain as a source of good clinical practice and philosophy of care at the end of life also in the future.
Kydd, Angela; Sharp, Barbara
The current focus in dementia care places emphasis on the potential of people to live well with the condition. Given the historical tendency to neglect the full rights and citizenship of people with dementia, such an emphasis gives hope and optimism that there is life after diagnosis. This paper seeks to explore the potential compromise of effective preparation for the complexities of advanced illness that may be presented by this consistently up-beat message. Dementia is a life limiting condition, currently without cure. Therefore, the appropriateness of palliative care may seem obvious. Yet, until relatively recently, palliative care was seen as an adjunct to oncology in the minds of professionals and public alike. However, there is a growing recognition that specialist palliative care has much to offer people with a range of long term conditions, including people with dementia. So, whilst 'living well' is an important message-especially following diagnosis-planning for advanced dementia and dying well is equally important. The aim of this paper is to highlight policy on the living well and the palliative care approach for people with dementia. A word limited narrative literature review was conducted to explore how policies have or have not informed the literature on both messages. The findings emphasise the need for a continuum approach to dementia care, with discussion on when, where, and how can palliative care be delivered for people with dementia. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
D'Angelo, Daniela; Mastroianni, Chiara; Artico, Marco; Biagioli, Valentina; Latina, Roberto; Guarda, Michela; Piredda, Michela; De Marinis, Maria Grazia
Patients suffering from advanced disease face different care transitions. The transition from acute to palliative care is challenging and may lead to the discontinuity of care. Family caregivers become important sources of information, as patients begin to experience difficulties in coping with emotional transition events. The Care Transition Measure was developed to evaluate care transitions as experienced by the elderly. It has never been used in palliative care. The aim of this study was to test the validity and reliability of a modified version of the Palliative Care Transition Measure, specifically the Palliative Care Transition Measure for Caregivers (PCTM-C). The study included two main phases. Phase I focused on the construction of a modified version of the Palliative Care Transition Measure through two focus groups and by computing the content validity index. Phase II focused on testing the psychometric properties of the PCTM-C on 272 family caregivers through confirmatory factor analysis. Result The content validity index for each of the items was higher than 0.80, whereas that for the scale was 0.95. The model tested with confirmatory factor analysis fitted the data well and confirmed that the transition measures referred to communication, integrated care and a trusting-relationship, and therefore the core dimensions of continuity according to existing conceptual models. The internal consistency was high (Cronbach's alpha = 0.94). Significance of results The PCTM-C proved to be a suitable measure of the quality of such transitions. It may be used in clinical practice as a continuity quality indicator and has the potential to guide interventions to enhance family caregivers' experience of care continuity.
Duc, Jacqueline K.; Herbert, Anthony Robert; Heussler, Helen S.
Background: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. Method: This study describes the complex care of children with life-limiting conditions and intellectual…
Tonia C Onyeka
Full Text Available Everyone, young and old, male and female, rich and poor, should have access to excellent care during the course of a serious illness and at the end of life. Therefore, a denial of such care becomes an infringement of the individual′s human rights. Because of the efforts of pioneers in this field of Medicine in Africa and beyond, both living and immortalized, we can now say that palliative care in the African context is affordable and achievable. In this article, some of the challenges faced in setting up and running a new palliative care practice in an emerging and developing economy are examined.
Thompson, Sarah; Bott, Marjorie; Boyle, Diane; Gajewski, Byron; Tilden, Virginia P
Efforts to improve care for nursing home residents stand to be enhanced by measures to assess the degree to which staff provide palliative care. As the incidence of death in nursing homes increases with the aging population, the gap in measurement must be addressed. To that end, we report the development and psychometric testing of a nursing home palliative care survey. The purpose of this study was to evaluate the psychometric properties of the Palliative Care Survey (PCS) for use in nursing homes. Psychometric evaluation of the instrument was completed in two phases. Phase 1 focused on individual item analyses and subsequent revision or deletion of items, and Phase 2 evaluated evidence for reliability and validity. Phase 1 included 26 nursing homes and staff (n=717), and Phase 2 included 85 nursing homes and staff (n=2779). Data were analyzed using item-total correlations, Cronbach's alpha, confirmatory factor analysis, and analysis of variance. Support was obtained for a 51-item PCS made up of two constructs, Palliative Care Practice and Palliative Care Knowledge. The PCS measures the extent to which the nursing home staff engage in palliative care practices and have knowledge consistent with good end-of-life care. Both practice and knowledge are an essential foundation to providing good end-of-life care to nursing home residents. Efforts to improve care for the dying in nursing homes have been slowed by an absence of measurement tools that capture care processes, a gap that the PCS reported here helps fill. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Steen, J.T. van der; Radbruch, L.; Boer, M.E. de; Jünger, S.; Hughes, J.C.; Larkin, P.; Gove, D.; Francke, A.L.; Koopmans, R.T.C.M.; Firth, P.; Volicer, L.; Hertogh, C.M.P.M.
Background: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and rec...
Prem, Venkatesan; Karvannan, Harikesavan; Kumar, Senthil P; Karthikbabu, Surulirajan; Syed, Nafeez; Sisodia, Vaishali; Jaykumar, Saroja
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...
Bull, Janet H; Whitten, Elizabeth; Morris, John; Hooper, Richelle Nugent; Wheeler, Jane L; Kamal, Arif; Abernethy, Amy P
In the U.S., the number of hospital-based palliative care programs has increased rapidly, but availability of outpatient palliative care remains limited. Multiple barriers impede the financial viability of these programs. Four Seasons, a nonprofit organization in western North Carolina, delivers a full spectrum of palliative care in hospitals, nursing homes, assisted living facilities, patients' homes, and outpatient clinics; its catchment area encompasses approximately 350,000 people. Initially focused on hospice care, Four Seasons added its palliative care program in 2003. Before the inquiry described herein, financial losses from outpatient palliative care (2003-2008) were escalating. We explored organizational and financial barriers to sustainability of palliative care, so as to 1) identify reasons for financial losses; 2) devise and implement solutions; and 3) develop a sustainable model for palliative care delivery across settings, including the outpatient setting. In 2008, Four Seasons's palliative care program served 305 patients per day (average) with 10.5 providers (physicians, nurse practitioners, and physician assistants); financial losses approached $400,000 per year. We used Quality Assessment and Performance Improvement cycles to identify challenges to and inefficiencies in service provision, developed targeted strategies for overcoming identified barriers to cost-efficiency, instituted these measures, and tracked results. In 2011, Four Seasons served 620 palliative care patients per day (average) with 14 providers; financial losses decreased by 40%. With health care reform promoting integration of care across settings, outpatient palliative care will gain importance in the health care continuum. Process changes can help reduce financial losses that currently impede outpatient palliative care programs. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Chen, I-Hui; Lin, Kuan-Yu; Hu, Sophia H; Chuang, Yeu-Hui; Long, Carol O; Chang, Chia-Chi; Liu, Megan F
To investigate the knowledge of and attitudes towards palliative care for advanced dementia and their associations with demographics among nursing staff, including nurses and nursing assistants, in long-term care settings. Nursing facilities are places where persons with dementia die; therefore, providing quality end-of-life care to residents with advanced dementia is crucial. To date, little attention has been paid to palliative care practice for patients with advanced dementia. A descriptive, cross-sectional, survey design was used. In total, a sample of 300 nurses (n = 125) and nursing assistants (n = 175) working in long-term care settings in Taiwan participated in this study. Two instruments were administered: demographic characteristics and responses to the Questionnaire of Palliative Care for Advanced Dementia. Descriptive statistics and multiple regression were used for data analysis. Overall, the nurses and nursing assistants had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Additionally, nursing staff who were nurses with greater work experience and those who had received palliative care and hospice training had greater knowledge of palliative care. In addition, nursing staff who had received dementia care training and who had worked in nursing homes had higher levels of positive attitudes towards palliative care. This study indicates the need to provide nurses and nursing assistants with more information about palliative care practice for people with advanced dementia. Particularly, providing education to those who are nursing assistants, who have less working experience, who have not received palliative and dementia care training, and who have not worked in nursing homes can improve overall nursing staff knowledge of and attitudes towards palliative care. Continuing education in principles of palliative care for advanced dementia is necessary for currently practicing nursing staff and
Al-Shahri, Mohammad Zafir
It is well established that provision of palliative care is a human right for the patients and their families going through the suffering associated with a life-threatening illness. The holistic nature of palliative care, dictated by the multifaceted suffering experienced by patients, calls for giving due consideration to the cultural and spiritual background of the target population. Similarly, the paramount impact of Islamic wholeness on Muslims' perceptions, beliefs, and way of living makes it necessary for non-Muslim palliative care professionals who are caring for Muslim patients to increase their awareness about the parts of Islamic theology pertinent to the principles of palliative care. This would include a basic knowledge of the Islamic faith and how Muslims view and cope with the calamity of a life-threatening condition along with the suffering associated with it. Equally important are issues related to the management of symptoms using agents that are normally strictly prohibited by Islamic teachings, including opioids, brain stimulants, and cannabinoids. The current review briefly discusses the Islamic perspectives pertinent to a Muslim patient's journey throughout the palliative care experience, onward to a safe passing, and beyond.
Erel, Meira; Marcus, Esther-Lee; Dekeyser-Ganz, Freda
People with dementia often fail to receive palliative care, despite increased recognition of their need and eligibility for such care. The aims of this study were to assess the barriers associated with a lack of implementation of palliative care for people with dementia and to explore whether there is a gap in knowledge necessitating further study. We reviewed the English literature published from 2000 to 2016, related to barriers to palliative care for people with dementia. Twenty-two articles met inclusion criteria for the review. Most originated in Europe or North America and were qualitative in nature. Four key themes were identified: administrative/policy issues, education, communication, and staff personal characteristics. Barriers to the delivery of palliative care for people with dementia have been studied for more than a decade, yet at present, there is a lack of consensus in practice. More research is needed related to barriers associated with personal characteristics. Such investigations have the potential to improve and better understand the complex nature of palliative care in this population.
Weissman, David E; Ambuel, Bruce; von Gunten, Charles F; Block, Susan; Warm, Eric; Hallenbeck, James; Milch, Robert; Brasel, Karen; Mullan, Patricia B
In 1998 we completed a successful regional pilot project in palliative care curriculum development among 32 internal medicine residency programs recruited from the mid-western United States. Between 1999 and 2004 this project was expanded to include 358 U.S. programs, from four specialties, based on new training requirements in internal medicine, family medicine, neurology, and general surgery. To assess the 1-year outcomes from residency programs participating in a national multispecialty palliative care curriculum development project. Outcome data obtained from residency programs' responses to a structured progress report 12 months after enrolling in the project and from published residency project reports. Three hundred fifty-eight residency programs, representing 27% of all eligible training programs in the four specialties, participated in the project. Outcome data was available from 224 residencies (63%). Most programs started new teaching in pain, non-pain symptom management, and communication skills. More than 50% of programs integrated palliative care topics within established institutional grand rounds, morbidity/mortality conferences or morning report. More than 70% of internal medicine and family practice programs began new direct patient care training opportunities utilizing hospital-based palliative care or hospice programs. New faculty development initiatives and use of quality improvement projects to drive curriculum change were reported in less than 50% of programs. Focused short-term instruction in palliative care curriculum development, in a diverse group of residency programs, is feasible and associated with significant curriculum change.
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.
Sandgren, A; Strang, P
The aims of this study were to describe and compare diagnoses, symptoms, and care needs in palliative cancer patients in two medium-sized hospitals in a county council with no specialized palliative care available 24/7; to analyze the relationships between diagnosis and symptoms/care needs; and to compare results and trends from two datasets (from 2007 and 2012). The study was population-based with a cross-sectional design and was conducted at two acute care hospitals. We performed 142 one-day inventories (n = 2972) in 2007 and 139 in 2012 (n = 2843) to register symptoms, care needs, and diagnosis based on a questionnaire. Multiple logistic regression models were used in the analysis. During 2007 and 2012 combined, 10% (n = 589) of hospitalized patients were assessed as having cancer in a palliative phase. Prostate (12%) and colorectal (12%) cancers were most common. Pain (42%) and deterioration (42%) were the most prevalent symptoms and were associated with pancreas cancer in our regression models (p = 0.003 and p = 0.019, respectively). Other cancers had different associations: hematologic malignancies were associated with infections and blood transfusions (p care needs was 2.9; patients with stomach/esophagus cancer had the highest number of symptoms/care needs (3.5). Acute care hospitals still play an important role for patients requiring palliative care. Symptoms and care needs were not strongly associated with specific diagnoses. Therefore, symptoms, rather than the specific cancer diagnoses, should be the focus of care.
Cheville, Andrea L; Morrow, Melissa; Smith, Sean Robinson; Basford, Jeffrey R
The growing acceptance of palliative care has created opportunities to increase the use of rehabilitation services among populations with advanced disease, particularly those with cancer. Broader delivery has been impeded by the lack of a shared definition for palliative rehabilitation and a mismatch between patient needs and established rehabilitation service delivery models. We propose the definition that, in the advanced cancer population, palliative rehabilitation is function-directed care delivered in partnership with other clinical disciplines and aligned with the values of patients who have serious and often incurable illnesses in contexts marked by intense and dynamic symptoms, psychological stress, and medical morbidity to realize potentially time-limited goals. Although palliative rehabilitation is most often delivered by inpatient physical medicine and rehabilitation consultation/liaison services and by physical therapists in skilled nursing facilities, outcomes in these settings have received little scrutiny. In contrast, outpatient cancer rehabilitation programs have gained robust evidentiary support attesting to their benefits across diverse settings. Advancing palliative rehabilitation will require attention to historical barriers to the uptake of cancer rehabilitation services, which include the following: patient and referring physicians' expectation that effective cancer treatment will reverse disablement; breakdown of linear models of disablement due to presence of concurrent symptoms and psychological distress; tension between reflexive palliation and impairment-directed treatment; palliative clinicians' limited familiarity with manual interventions and rehabilitation services; and challenges in identifying receptive patients with the capacity to benefit from rehabilitation services. The effort to address these admittedly complex issues is warranted, as consideration of function in efforts to control symptoms and mood is vital to optimize
Although palliative care has significant and positive effects on patients and their families, as it is scientifically proven, however, it is not a permanent part of health care mainstream. The aim of this systematic literature review was to describe barriers in palliative care that stops it from becoming a permanent component of healthcare…
Full Text Available The presence of acute or chronic respiratory failure is often seen as a terminal phase of chronic obstructive pulmonary disease. A great variability in end-of-life practice is observed in these patients mainly because physicians are not always able to correctly predict survival. There is a need for a clear discussion about decision making earlier than when acute respiratory failure ensues. Indeed, a perceived poor quality of life does not necessarily correlate with a clear willingness to refuse invasive or noninvasive mechanical ventilation. It has been suggested to start palliative care earlier, together with curative and restorative care, when there is an increased intensity of symptoms. The patients eligible for palliative care are those complaining of breathlessness, pain, fatigue and depression, which in some studies accounted for a prevalence much higher than 50%. Among comfort measures for palliation, oxygen is frequently prescribed even when the criteria for long-term home oxygen therapy are not met; however, when compared with air, no benefits on dyspnoea have been found. The only drug with a proven effect on dyspnoea is morphine, but not when it is delivered with a nebuliser. Finally, noninvasive ventilation may be used only as a comfort measure for palliation to maximise comfort by minimising adverse effects.
Zalot, G N
Table 1 summarizes the role of task force members and staff for each of the main tasks of the process of planning. The number of meetings required for each stage of the process is estimated in the last column. Planning for a regional palliative care services network is a process involving "hard" and "soft" elements. Hard elements involve the organizational structure, task force meetings, information/statistical data bases and the discrete tasks summarized in Table 1. These elements are well known, if nokt always well organized in practice. It is the "softer" elements that usually mean the difference between a dull bureaucratic exercise and a creative exchange of ideas and concepts with a vision for the future. Not to be underestimated is the critical role of group development in this process. The Task Force, supported by professional staff expertise and judgment, hopes to achieve a level of group development termed "synergy," that is, where the group outperforms (in terms of quality and quantity of work) its best individual member. Not a small feat, but critical to a successful planning exercise! Any regional planning implies a commitment to change. After all, new services will be added, some phased out, others revised, and others enhanced, resulting in changes in roles and responsibilities of providers. Change should not be greeted with disdain but viewed as a natural part of the environment in which we plan and provide services. A major advantage to the process of planning is that the level of support for change is already mobilized through the various stages of the process highlighted.(ABSTRACT TRUNCATED AT 250 WORDS)
Pollak, Kathryn I; Childers, Julie W; Arnold, Robert M
Palliative care relies heavily on communication. Although some guidelines do address difficult communication, less is known about how to handle conversations with patients who express ambivalence or resistance to such care. Clinicians also struggle with how to support patient autonomy when they disagree with patient choices. Motivational Interviewing (MI) techniques may help address these responses. Specifically, MI techniques such as reflective statements and summarizing can help reduce a patient's resistance, resolve patient ambivalence, and support patient autonomy. Not all the MI techniques are applicable, however, in part because palliative care clinicians do not guide patients to make particular choices but, instead, help patients make choices that are consistent with patient values. Some elements from MI can be used to improve the quality and efficacy of palliative care conversations.
Bergenholtz, Heidi; Jarlbæk, Lene; Hølge-Hazelton, Bibi
Background: In many countries, approximately half of the population dies in hospital, making general palliative nursing care (GPNC) a core nursing task. GPNC in the hospital setting is described as challenging, however little is known about its actual practice. Aim: To explore the GPNC culture...... 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......; however, the content of this term was not defined or expressed among the health professionals. Practical and professional nursing skills are not sufficient to improve GPNC in the hospital department. Leaders on all levels need also to address the culture in which palliative care is embedded....
Turriziani, Adriana; Attanasio, Gennaro; Scarcella, Francesco; Sangalli, Luisa; Scopa, Anna; Genualdo, Alessandra; Quici, Stefano; Nazzicone, Giulia; Ricciotti, Maria Adelaide; La Commare, Francesco
In the last decades, palliative care has been more and more focused on the evaluation of patients' and families' satisfaction with care. However, the evaluation of customer satisfaction in palliative care presents a number of issues such as the presence of both patients and their families, the frail condition of the patients and the complexity of their needs, and the lack of standard quality indicators and appropriate measurement tools. In this manuscript, we critically review existing evidence and literature on the evaluation of satisfaction in the palliative care context. Moreover, we provide - as a practical example - the preliminary results of our experience in this setting with the development of a dedicated tool for the measurement of satisfaction.
Coats, Heather; Paganelli, Tia; Starks, Helene; Lindhorst, Taryn; Starks Acosta, Anne; Mauksch, Larry; Doorenbos, Ardith
There is a known shortage of trained palliative care professionals, and an even greater shortage of professionals who have been trained through interprofessional curricula. As part of an institutional Palliative Care Training Center grant, a core team of interprofessional palliative care academic faculty and staff completed a state-wide palliative care educational assessment to determine the needs for an interprofessional palliative care training program. The purpose of this article is to describe the process and results of our community needs assessment of interprofessional palliative care educational needs in Washington state. We approached the needs assessment through a cross-sectional descriptive design by using mixed-method inquiry. Each phase incorporated a variety of settings and subjects. The assessment incorporated multiple phases with diverse methodological approaches: a preparatory phase-identifying key informants; Phase I-key informant interviews; Phase II-survey; and Phase III-steering committee endorsement. The multiple phases of the needs assessment helped create a conceptual framework for the Palliative Care Training Center and developed an interprofessional palliative care curriculum. The input from key informants at multiple phases also allowed us to define priority needs and to refine an interprofessional palliative care curriculum. This curriculum will provide an interprofessional palliative care educational program that crosses disciplinary boundaries to integrate knowledge that is beneficial for all palliative care clinicians. The input from a range of palliative care clinicians and professionals at every phase of the needs assessment was critical for creating an interprofessional palliative care curriculum.
Lillyman, Sue; Bruce, Mary
With growing numbers of people dying with, and from, dementia there is a need for professionals and health-care organisations to review the access to and provision of palliative care. This literature review has identified several key themes in relation to the person dying with dementia including: diagnosis of the dying phase, appropriate timing of referral to specialist palliative care services; ethical decisions in relation to medication and nutrition; the environment; undertreatment especially, for pain relief; over and burdensome treatment interventions; carer involvement; collaborative working and advance decision making.
Yeaman, Paul A; Ford, James L; Kim, Kye Y
Providing quality palliative care is a daunting task profoundly impacted by diminished patient capacity at the end of life. Alzheimer disease (AD) is a disorder that erases our memories and is projected to increase dramatically for decades to come. By the time the patients with AD reach the end stage of the disease, the ability of patients to provide pertinent subjective complaints of pain and discomfort would have vanished. Historical perspectives of palliative care, exploration of the AD process, ethical issues, and crucial clinical considerations are provided to improve the understanding of disease progression and quality of care for patients with end-stage AD.
The aim of this project was to identify the support required by registered nurses and unregistered healthcare support workers to provide palliative care for people with dementia in an acute hospital in England. A quantitative approach was taken and participants were asked to fill in a questionnaire. Data were collated and analysed to identify support needs and any emerging themes. Respondents were confident in identifying the different stages of dementia. There was less confidence in identifying a patient with dementia for palliative care referral compared with a patient without dementia. Further needs were identified by respondents in supporting the family/carer of the person with dementia and being aware of available support to facilitate palliative care for people with dementia and support for end of life care (EoLC) planning. The findings suggest that further work is required in relation to dementia and EoLC. Practical and educational collaboration with EoLC/palliative care practitioners and dementia leads would be beneficial.
Hirooka, Kayo; Miyashita, Mitsunori; Morita, Tatsuya; Ichikawa, Takeyuki; Yoshida, Saran; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Eguchi, Kenji
Although confidence in providing palliative care services is an essential component of providing such care, factors relating to this have not been investigated in Japan. This study aimed to explore confidence in the ability to provide palliative care and associated difficulties and to explore correlations between these variables. Design A cross-sectional mail survey of medical doctors and registered nurses in Japan was performed as part of a regional intervention trial: the Outreach Palliative Care Trial of Integrated Regional Model study. Subjects Questionnaires were sent to 7905 medical professionals, and 409 hospital doctors, 235 general practitioners, 2160 hospital nurses and 115 home visiting nurses completed them. Confidence in providing palliative care was low and difficulties frequent for all types of medical professionals assessed. In particular, only 8-24% of them, depending on category, agreed to 'having adequate knowledge and skills regarding cancer pain management'. In particular, 55-80% of medical professionals acknowledged difficulty with 'alleviation of cancer pain'. Multiple regression analysis revealed that confidence was positively correlated with the amount of relevant experience and, for medical doctors, with 'prescriptions of opioids (per year)'. Moreover, difficulties were negatively correlated with the amount of relevant clinical experience. Effective strategies for developing regional palliative care programs include basic education of medical professionals on management of cancer-related pain (especially regarding opioids) and other symptoms.
Mercadante, Sebastiano; Masedu, Francesco; Mercadante, Alessandro; Marinangeli, Franco; Aielli, Federica
Information about the attitudes towards palliative sedation (PS) at home is limited. The aim of this survey was to assess the attitudes of palliative care physicians in Italy regarding PS at home. A questionnaire was submitted to a sample of palliative care physicians, asking information about their activity and attitudes towards PS at home. This is a survey of home care physicians in Italy who were involved in end-of-life care decisions at home. One hundred and fifty participants responded. A large heterogeneity of home care organizations that generate some problems was found. Indications, intention and monitoring of PS seem to be appropriate, although some cultural and logistic conditions were limiting the use of PS. Specialized home care physicians are almost involved to start PS at home. Midazolam was seldom available at home and opioids were more frequently used. These data should prompt health care agencies to make a minimal set of drugs easily available for home care. Further research is necessary to compare attitudes in countries with different sociocultural profiles.
Chover-Sierra, Elena; Martínez-Sabater, Antonio; Lapeña-Moñux, Yolanda Raquel
Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in final stages of their life. Nurses need to acquire specific knowledge and abilities to provide quality palliative care. Palliative Care Quiz for Nurses is a questionnaire that evaluates their basic knowledge about palliative care. The Palliative Care Quiz for Nurses (PCQN) is useful to evaluate basic knowledge about palliative care, but its adaptation into the Spanish language and the analysis of its effectiveness and utility for Spanish culture is lacking. To report the adaptation into the Spanish language and the psychometric analysis of the Palliative Care Quiz for Nurses. The Palliative Care Quiz for Nurses-Spanish Version (PCQN-SV) was obtained from a process including translation, back-translation, comparison with versions in other languages, revision by experts, and pilot study. Content validity and reliability of questionnaire were analyzed. Difficulty and discrimination indexes of each item were also calculated according to Item Response Theory (IRT). Adequate internal consistency was found (S-CVI = 0.83); Cronbach's alpha coefficient of 0.67 and KR-20 test result of 0,72 reflected the reliability of PCQN-SV. The questionnaire had a global difficulty index of 0,55, with six items which could be considered as difficult or very difficult, and five items with could be considered easy or very easy. The discrimination indexes of the 20 items, show us that eight items are good or very good while six items are bad to discriminate between good and bad respondents. Although in shows internal consistency, reliability and difficulty indexes similar to those obtained by versions of PCQN in other languages, a reformulation of the items with lowest content validity or discrimination indexes and those showing difficulties with their comprehension is an aspect to take into account in order to improve the PCQN-SV. The PCQN-SV is a useful Spanish language
Full Text Available Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in final stages of their life. Nurses need to acquire specific knowledge and abilities to provide quality palliative care. Palliative Care Quiz for Nurses is a questionnaire that evaluates their basic knowledge about palliative care. The Palliative Care Quiz for Nurses (PCQN is useful to evaluate basic knowledge about palliative care, but its adaptation into the Spanish language and the analysis of its effectiveness and utility for Spanish culture is lacking.To report the adaptation into the Spanish language and the psychometric analysis of the Palliative Care Quiz for Nurses.The Palliative Care Quiz for Nurses-Spanish Version (PCQN-SV was obtained from a process including translation, back-translation, comparison with versions in other languages, revision by experts, and pilot study. Content validity and reliability of questionnaire were analyzed. Difficulty and discrimination indexes of each item were also calculated according to Item Response Theory (IRT.Adequate internal consistency was found (S-CVI = 0.83; Cronbach's alpha coefficient of 0.67 and KR-20 test result of 0,72 reflected the reliability of PCQN-SV. The questionnaire had a global difficulty index of 0,55, with six items which could be considered as difficult or very difficult, and five items with could be considered easy or very easy. The discrimination indexes of the 20 items, show us that eight items are good or very good while six items are bad to discriminate between good and bad respondents.Although in shows internal consistency, reliability and difficulty indexes similar to those obtained by versions of PCQN in other languages, a reformulation of the items with lowest content validity or discrimination indexes and those showing difficulties with their comprehension is an aspect to take into account in order to improve the PCQN-SV.The PCQN-SV is a useful
In the Netherlands around 4000 – 6700 children with life-limiting diseases could benefit from paediatric palliative care (PPC). However, adequate PPC is often absent due to the lack of continuity and coordination of care and limited expertise among healthcare professionals (HCP). Consequently, many
Bouca-Machado, R.; Titova, N.; Chaudhuri, K.R.; Bloem, B.R.; Ferreira, J.J.
Parkinson's disease is the second most common neurodegenerative disease worldwide. There is widespread consensus that Parkinson patients, their carers, and clinicians involved in their care would benefit from a fully integrated, need-based provision of palliative care. However, the concept of
The mobile palliative care and support team nurse works in different departments within the hospital. The clinical situation of a patient enables the team to identify in what ways she is declining and thereby participate in the care management in order to favour the patient's return home. Copyright © 2015 Elsevier Masson SAS. All rights reserved.
Background. In general, the principles of palliative care suggest that, at some stage, patients should be given 'bad news' about poor illness prognosis. e information is oen important for care planning, especially when it involves disclosure to children. Although there are ongoing debates about whether to tell or not to tell ...
Schwantes, Scott; O'Brien, Helen Wells
Children with complex chronic medical conditions are at risk for significant distress during multiple points in their life. Pediatric palliative care can meaningfully assist in providing support to the child and family throughout their complex care, managing distressing symptoms, anticipating future decision points, and helping the child and family to thrive in their local community. Copyright © 2014 Elsevier Inc. All rights reserved.
Conclusions: Holistic palliative care can reduce the desperate poverty driven by life-limiting illness, and can do so systematically, on a large-scale, in-depth, especially if started early in the illness. Home-based care also frees up hospitals to serve more patients with treatable conditions.
Klarare, Anna; Rasmussen, Birgit H; Fossum, Bjöörn; Fürst, Carl Johan; Hansson, Johan; Hagelin, Carina Lundh
Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care. Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC). A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes. Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions. Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.
Kizawa, Yoshiyuki; Yamamoto, Ryo
Although palliative care is assuming an increasingly important role in patient care, most physicians did not learn to provide palliative care during their medical training. To address these serious deficiencies in physician training in palliative care, government decided to provide basic palliative education program for all practicing cancer doctors as a national policy namely Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education(PEACE). The program was 2-days workshop based on adult learning theory and focusing on symptom management and communication. In this 9 years, 4,888 educational workshop has been held, and 93,250 physicians were trained. In prospective observational study, both knowledges and difficulties practicing palliative care were significantly improved. In 2017, the new palliative care education program will be launched including combined program of e-learning and workshop to provide tailor made education based on learner's readiness and educational needs in palliative care.
... a Provider 3. Meet the Team Palliative Care Team The palliative care team will spend a lot of time with you ... your goals. But what should you ask the team during the meeting? Here are some suggestions: What ...
Brenda M. Morrow
Conclusion: Many South African physiotherapists manage patients requiring palliative care, despite inadequate training and limited knowledge in this field. More under- and postgraduate learning opportunities should be made available for physiotherapists in the area of palliative care.
Wiener, Lori; McConnell, Denice Grady; Latella, Lauren; Ludi, Erica
A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling
Strömgren, Annette S; Goldschmidt, Dorthe; Groenvold, Mogens
-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...... symptoms. According to the HADS, 47% of patients suffered from depression. Outpatients had better scores than inpatients and patients in palliative home care for physical function, role function, cognitive function, depression, and inactivity. CONCLUSIONS: It is possible to carry out a questionnaire......-based study of symptomatology in consecutive cancer patients in palliative care, achieving rather complete data from the participants. The symptomatology in these patients was very pronounced. The questionnaires were able to detect clinically important differences between places of service....
Full Text Available Introduction: Understanding the profile of end users is a key input for designing a service. Centers that provide full-scale palliative care are few and far between in our country, and there is a need to open more centers to extend the services to a larger percentage of patients. Methods: Patient data from the inception of the center till January 2016 have been stored in a database. The data were mined, exported to Excel, and analyzed. Results: The data of 11,258 patients revealed the profile of patients, including their age, gender distribution, marital status, symptomology, and outcome. The present paper describes the profile of patients opting for palliative care in our country. Conclusions: The profile of patients registered at this center validates certain assumptions while debunking others. It is hoped that this profile gives some guidance to those desirous of setting up palliative care services.
Nakanishi, Miharu; Miyamoto, Yuki
This study examined factors contributing to the knowledge and attitudes of nursing home staff regarding palliative care for advanced dementia in Japan. A cross-sectional survey of 275 nurses and other care workers from 74 long-term care facilities was conducted across three prefectures in August 2014. The Japanese versions of the Questionnaire on Palliative Care for Advanced Dementia (qPAD) and Frommelt Attitudes Toward Care of the Dying scale, Form B (FATCOD-B-J) were used. Greater knowledge was exhibited among nursing home staff in facilities that established a manual for end-of-life care. Higher levels of positive attitudes were observed among nursing home staff in facilities that had established a manual and those in facilities with a physician's written opinions on end-of-life care. An organisational effort should be explored to establish end-of-life care policies among nursing home staff for advanced dementia.
Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M
Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears.
Yu, Mo; Guerriere, Denise N; Coyte, Peter C
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
Mitchell, Gary; McGreevy, Jessie; Preshaw, Deborah Hl; Agnelli, Joanne; Diamond, Monica
The aim of this study was to determine care home managers' knowledge of palliative care using the palliative care quiz for nursing (PCQN). Palliative care is strongly advocated for all people living with advancing incurable illness. Within a care home setting there should be a particular emphasis on the importance of palliative care, particularly for those residents who, because of their advancing age, are likely to live with non-malignant diseases such as dementia, chronic obstructive pulmonary disease or heart failure to name a few. Before the beginning of a workshop on optimising palliative care for people living in care homes, 56 care home managers (all nurses) completed the PCQN, a validated questionnaire that is used to assess a nurse's knowledge of palliative care, as part of a learning exercise. The quiz consisted of 20 questions for which participants could answer true, false or don't know. The average score was 12.89 correct answers out of a possible 20 (64.45%). This study highlights the need to develop the knowledge and competence of care home managers in relation to palliative care. This is particularly important given the increasing number of people who are living with non-malignant disease within a care home setting.
Carpenter, Joan G; Berry, Patricia H; Ersek, Mary
Palliative care consultation (PCC) during hospitalization is increasingly common for older adults with life-limiting illness discharged to nursing homes. The objective of this qualitative descriptive study was to describe the care trajectories and experiences of older adults admitted to a nursing home following a PCC during hospitalization. Twelve English-speaking adults, mean age 80 years, who received a hospital PCC and discharge to a nursing home without hospice. Data were collected from medical records at five time points from hospital discharge to 100 days after nursing home admission and care trajectories were mapped. Interviews (n = 15) with participants and surrogates were combined with each participant's medical record data. Content analysis was employed on the combined dataset. All PCC referrals were for goals of care conversations during which the PCC team discussed poor prognosis. All participants were admitted to a nursing home under the Medicare skilled nursing facility benefit. Seven were rehospitalized; six of the 12 died within 6 weeks of initial nursing home admission. The two care trajectories were Focus on Rehabilitative Care and Comfort Care Continuity. There was a heavy emphasis on recovering functional status through rehabilitation and skilled nursing care, despite considerable symptom burden and poor prognosis. Regardless of PCC with recommendations for palliative interventions, frail older adults with limited life expectancy and their family caregivers often perceive that rehabilitation will improve physical function. This perception may contribute to inappropriate, ineffective care. More emphasis is needed to coordinate care between PCC recommendations and post-acute care. Copyright © 2017 Elsevier Inc. All rights reserved.
Schmidt-Wolf, G; Elsner, F; Lindena, G; Hilgers, R-D; Heussen, N; Rolke, R; Ostgathe, C; Radbruch, L
With a priority programme the German Cancer Aid supported the development of quality-assured outpatient palliative care to cover the whole country. The 12 regional pilot projects funded with the aim to improve outpatient palliative care in different models and different frameworks were concurrently monitored and evaluated. The supported projects, starting and ending individually, documented all patients who were cared for using HOPE (Hospice and palliative care evaluation) and MIDOS (Minimal documentation system for palliative patients). Total data were analyzed for 3239 patients decriptively. In addition to the quantitative data the experiences of the projects were recorded in a number of workshops (2008, 2009, 2010, and 2012). In particular, the experiences reported in the final meeting in July 2012 were considered for this article as well as the final reports for the German Cancer Aid. In the quantitative evaluation 85.6% of 3239 palliative care patients had a cancer diagnosis. In all model projects the goal of a network with close cooperation of primary providers, social support, and outpatient and inpatient specialist services has been achieved. For all projects, the initial financing of the German Cancer Aid was extremely important, because contracts with health insurance funds were negotiated slowly, and could then be built on the experiences with the projects. The participants of the project-completion meeting emphasized the need to carry out a market analysis before starting palliative care organizations considering the different regional structures and target groups of patients. Education, training and continuing education programs contribute significantly to the network. A reliably funded coordination center/case management across all institutions is extremely important. © Georg Thieme Verlag KG Stuttgart · New York.
Isermeyer, Leonie; Ilse, Benjamin; Marx, Gabriella; Seidemann, Stephanie; Jünger, Jana; Nauck, Friedemann; Alt-Epping, Bernd
Introduction In 2009, palliative care was introduced as a mandatory subject in the undergraduate medical curriculum in Germany. Despite all efforts to integrate this subject into the curriculum, research suggests substantial differences and deficits in the quality of education between the medical schools. The aim of this research was to find out promoting as well as impedimental aspects of implementing palliative care in the medical training program. By this, a suitable framework in terms of content and structure for palliative care teaching should be extracted. Methods We performed guided interviews with 15 of the in total 36 lecturers responsible for the implementation of palliative care teaching at their respective medical schools. We focused on content, design and methods of implementation within the palliative care curriculum. Data was evaluated by content analysis according to Meuser and Nagel. Results We found that a lack of recognition of this subject within the medical faculties, coupled with entrenched structures of an already packed syllabus, were considered to be most relevant for the given heterogeneity in the implementation process. Deficits in personnel, financial and time resources also contributed to the perceived deficits. Faced with these difficulties, inner- and cross-faculty teamwork and support, extracurricular activities as well as external funds have proven to be important resources. Discussion To promote the implementation process, medical faculties need established palliative care structures that meet the interests and needs of the students more effectively. Analysis of structural needs (for instance, the amount of apprenticeships and teachings units) would be an important step to prove political claims. Moreover, the development of suitable and resource-saving teaching and assessment methods should be promoted. © Georg Thieme Verlag KG Stuttgart · New York.
Full Text Available Background: Palliative care programs are rapidly evolving for patients with life-threatening illnesses. Increased and earlier access for facilities is a subject of growing importance in health services, policy, and research. Aim: This study was conducted to explain stakeholders' perceptions of the factors affecting the design of such a palliative care system and its policy analysis. Methodology: Semi-structured in-depth interviews conducted following purposive sampling of the participants. Twenty-two participants were included in the study. The interviews were analyzed using qualitative-directed content analysis based on "policy analysis triangle" framework. Results: The findings showed the impact of four categories, namely context (political, social, and structural feasibility, content (target setting, process (attracting stakeholder participation, the standardization of care, and education management, and actors (the Ministry of Health and Medical Education, health-care providers, and volunteers in the analysis of the palliative care policies of Iran. Conclusion: In the past 6 years, attention to palliative care has increased significantly as a result of the National Cancer Research Network with the support of the Ministry of Health. The success of health system plan requires great attention to its aspects of social, political, and executive feasibility. Careful management by policymakers of different stakeholders is vital to ensure support for any national plan, but this is challenging to achieve.
Smith, Grant; Bernacki, Rachelle; Block, Susan D
By 2021, health care spending is projected to grow to 19.6% of the GDP, likely crowding out spending in other areas. The 2010 Affordable Care Act (ACA) attempts to curb health care spending by incentivizing high-value care through the creation of Accountable Care Organizations (ACOs), which assume financial risk for patient outcomes. With this financial risk, health systems creating ACOs will be motivated to pursue innovative care models that maximize the value of care. Palliative care, as an emerging field with a growing evidence base, is positioned to improve value in ACOs by increasing high-quality care and decreasing costs for the sickest patients. ACO leaders may find palliative care input valuable in optimizing high-quality patient-centered care in the accountable care environment; however, palliative care clinicians will need to adopt new models that extrapolate their direct patient care skills to population management strategies. We propose that palliative care specialists take on responsibilities for working with ACO leaders to broaden their mission for systemwide palliative care for appropriate patients by prospectively identifying patients with a high risk of death, high symptom burden, and/or significant psychosocial dysfunction, and developing targeted, "triggered" interventions to enhance patient-centered, goal-consistent, coordinated care. Developing these new population management competencies is a critical role for palliative care teams in the ACO environment.
Eychmüller, Steffen; Forster, M; Gudat, H; Lütolf, U M; Borasio, G D
BACKGROUND In 2007, a first survey on undergraduate palliative care teaching in Switzerland has revealed major heterogeneity of palliative care content, allocation of hours and distribution throughout the 6 year curriculum in Swiss medical faculties. This second survey in 2012/13 has been initiated as part of the current Swiss national strategy in palliative care (2010 - 2015) to serve as a longitudinal monitoring instrument and as a basis for redefinition of palliative care learning obje...
Manjiri P Dighe
Full Text Available Recent advances in medical care have improved the survival of newborn babies born with various problems. Despite this death in the neonatal intensive care unit (NICU is an inevitable reality. For babies who are not going to "get better," the health care team still has a duty to alleviate the physical suffering of the baby and to support the family. Palliative care is a multidisciplinary approach to relieve the physical, psycho social, and spiritual suffering of patients and their families. Palliative care provision in the Indian NICU settings is almost nonexistent at present. In this paper we attempt to "build a case" for palliative care in the Indian NICU setting.
Harrison Dening, Karen
Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted.
Engelman, Suzanne R
A growing body of research and clinical reports support the benefits of utilizing animal-assisted therapy (AAT) as a complementary, transdisciplinary treatment intervention in medical settings. However, fewer articles are found demonstrating AAT's use in palliative care settings. This article is a study of the effects of AAT in palliative care situations, presenting one anecdotal clinical vignette. In this way, the efficacy of this technique in decreasing patient pain, thereby increasing patient quality of life, and lowering staff stress levels may be illustrated.
O'Callaghan, C C
An analysis of the music therapy literature yields numerous reports to support the role of music in the alleviation of pain in palliative care. Four theoretical perspectives that support why many patients report reduced pain sensation after music therapy include: the psychological relationship between music and pain; the psychophysiological theory; spinal mechanisms involved in pain modulation; and the role of endorphins. Considerations significant to the use of music in pain relief include how music, used inappropriately, can aggravate pain sensation. Case studies, which include the use of creative music therapy techniques, point to the efficacy of music therapy in alleviating the pain experiences of both palliative care patients and their significant others.
Lloyd-Williams, Mari; Mogan, Caroline; Dening, Karen Harrison
Dementia is now recognized as a progressive life-limiting illness where many patients can benefit from access to palliative care. The present review has focused on three areas namely, advanced care planning in supporting palliative care for dementia, hospice provision for people with dementia and provision of care within family home. In advanced care planning, there is little research on systematically developed and implemented advance care planning interventions or whether they achieve desired outcomes for end-of-life care. There is limited research on hospice-based care for patients with dementia and most studies are U.S. based. Equally studies exploring how family carers can be supported and facilitated to care at home for the person with dementia to the end of life are exploratory rather than determining what factors may be important. There are relatively few studies, especially quantitative studies or intervention studies being carried out to determine most effective means of providing palliative care for people with dementia, particularly with respect to advanced care planning, the provision of hospice-based care and support at home. Despite increased public awareness of dementia as a terminal illness, more research is required to support patients with dementia and their families at the end of life.
Kozlov, Elissa; Niknejad, Bahar; Reid, M C
Patients with advanced illness often have high rates of psychological symptoms. Many multicomponent palliative care intervention studies have investigated the efficacy of overall symptom reduction; however, little research has focused explicitly on how interventions address psychological symptoms associated with serious illness. The current study reviewed 59 multicomponent palliative care intervention articles and analyzed the mental health components of palliative care interventions and their outcomes in order to better understand the current state of psychological care in palliative care. The majority of articles (69.5%) did not provide any details regarding the psychological component delivered as part of the palliative care intervention. Most (54.2%) studies did not specify which provider on the team was responsible for providing the psychological intervention. Studies varied regarding the type of outcome measure utilized; multi-symptom assessment scales were used in 54.2% of studies, mental health scales were employed in 25.4%, quality of life and distress scales were used in 16.9%, and no psychological scales were reported in 28.8%. Fewer than half the studies (42.4%) documented a change in a psychological outcome. The majority of analyzed studies failed to describe how psychological symptoms were identified and treated, which discipline on the team provided the treatment, and whether psychological symptoms improved as a result of the intervention. Future research evaluating the effects of palliative care interventions on psychological symptoms will benefit from using reliable and valid psychological outcome measures and providing specificity regarding the psychological components of the intervention and who provides it.
Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz
Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources. PMID:27226663
Stanley S.L. Tsai
Conclusion: A multimodule curriculum of palliative care for medical students can significantly improve their knowledge on principles of clinical management and beliefs about ethical decision-making in palliative care. As for changes in beliefs about ethical decision-making in palliative care, continued ethical and clinical training is required.
Conclusion: Life and work experience improve the accuracy of medical staff in providing hospice palliative care. A culture-based, case-oriented continuing education program and a timely revision of the Hospice Palliative Care Article are recommended to increase the consistency between the principle and the practice of hospice palliative care.
Kawaguchi, S; Mirza, R; Nissim, R; Ridley, J
Internal medicine residents are frequently called upon to provide palliative care to hospitalized patients, but report feeling unprepared to do so effectively. Curricular development to enhance residents' palliative care skills and competencies requires an understanding of current beliefs, attitudes and learning priorities. We conducted a qualitative study consisting of semi-structured interviews with ten internal medicine residents to explore their understanding of and experiences with palliative care. All of the residents interviewed had a sound theoretical understanding of palliative care, but faced many challenges in being able to provide care in practice. The challenges described by residents were system-related, patient-related and provider-related. They identified several priority areas for further learning, and discussed ways in which their current education in palliative care could be enhanced. Our findings provide important insights to guide curricular development for internal medicine trainees. The top five learning priorities in palliative care that residents identified in our study were: 1) knowing how and when to initiate a palliative approach, 2) improving communication skills, 3) improving symptom management skills, 4) identifying available resources, and 5) understanding the importance of palliative care. Residents felt that their education in palliative care could be improved by having a mandatory rotation in palliative care, more frequent didactic teaching sessions, more case-based teaching from palliative care providers, opportunities to be directly observed, and increased support from palliative care providers after-hours.
Full Text Available Context: Patients diagnosed with a disease like cancer require not only physical control of disease but also they need psychological reassurance, social and spiritual support in coming to terms with their disease. Nurses working in the specialized cancer hospitals play a significant role in the care of terminally ill patients. They must be knowledgeable, skilled and sensitive to the needs of these patients and their families in order to provide active, holistic care. Aims: In this study, we attempted to assess the level of knowledge about palliative care among nurses working in the oncology department using a self administered structured questionnaire and also to assess the effectiveness of information booklet designed on various aspects of palliative care on their knowledge. Settings and Design: Indo American Cancer Hospital, Hyderabad, AP, India. The design adopted for this study was One Group pretest - posttest, pre - experimental design. Materials and Methods: Hundred nurses working in Indo American Cancer Hospital, Hyderabad, AP, India were selected by using the non probability purposive sampling technique. A structured self administered questionnaire was prepared and administered as a pretest. An information booklet was developed pertaining to the general concepts of palliative care, care components (physical, social, emotional and spiritual and role of the nurse in palliative care and it was given to the participants. As a post test, the same questionnaire was re-administered after four days to the same study subjects. Pretest and post test knowledge scores were compared and the findings were analyzed statistically. Statistical analysis used : Microsoft Excel and Statistical Package for Social Science package. Results: The post test scores were significantly higher than the pretest knowledge scores, which indicate that the developed information booklet regarding palliative care was highly effective in enhancing the knowledge levels of the
Eychmüller, S; Forster, M; Gudat, H; Lütolf, U M; Borasio, G D
In 2007, a first survey on undergraduate palliative care teaching in Switzerland has revealed major heterogeneity of palliative care content, allocation of hours and distribution throughout the 6 year curriculum in Swiss medical faculties. This second survey in 2012/13 has been initiated as part of the current Swiss national strategy in palliative care (2010 - 2015) to serve as a longitudinal monitoring instrument and as a basis for redefinition of palliative care learning objectives and curriculum planning in our country. As in 2007, a questionnaire was sent to the deans of all five medical faculties in Switzerland in 2012. It consisted of eight sections: basic background information, current content and hours in dedicated palliative care blocks, current palliative care content in other courses, topics related to palliative care presented in other courses, recent attempts at improving palliative care content, palliative care content in examinations, challenges, and overall summary. Content analysis was performed and the results matched with recommendations from the EAPC for undergraduate training in palliative medicine as well as with recommendations from overseas countries. There is a considerable increase in palliative care content, academic teaching staff and hours in all medical faculties compared to 2007. No Swiss medical faculty reaches the range of 40 h dedicated specifically to palliative care as recommended by the EAPC. Topics, teaching methods, distribution throughout different years and compulsory attendance still differ widely. Based on these results, the official Swiss Catalogue of Learning Objectives (SCLO) was complemented with 12 new learning objectives for palliative and end of life care (2013), and a national basic script for palliative care was published (2015). Performing periodic surveys of palliative care teaching at national medical faculties has proven to be a useful tool to adapt the national teaching framework and to improve the
O'Mahony, Sean; Johnson, Tricia J; Amer, Shawn; McHugh, Marlene E; McHenry, Janet; Fosler, Laura; Kvetan, Vladimir
Referrals to palliative care for patients at the end of life in the intensive care unit (ICU) often happen late in the ICU stay, if at all. The integration of a palliative medicine advanced practice nurse (APN) is one potential strategy for proactively identifying patients who could benefit from this service. To evaluate the association between the integration of palliative medicine APNs into the routine operations of ICUs and hospital costs at 2 different institutions, Montefiore Medical Center (MMC) and Rush University Medical Center. The association between collaborative palliative care consultation service programs and hospital costs per patient was evaluated for the 2 institutions. Hospital costs were compared for patients with and without a referral to palliative care using Mann-Whitney U tests. Hospital nonroom and board costs at the Weiler campus of MMC were significantly lower for patients with palliative care compared with those who did not receive palliative care (Median = US$6643 vs US$12 399, P integration of APNs into a palliative care team for case finding may be a promising strategy, but more work is needed to determine whether reductions in cost are significant.
Brajtman, Susan; Higuchi, Kathryn; Murray, Mary Ann
To help nurses develop effective clinical decision-making skills, it is essential that palliative care education includes opportunities for undergraduate and practicing nurses to develop cognitive skills in addressing real-life clinical problems. This article describes the learning experiences within an elective nursing course designed to strengthen the clinical decision-making skills of students in the context of palliative care and interprofessional practice. A description of the course context, major learning assignment and evaluation rubic, and reflections on the learning process in terms of clinical decision-making and interprofessional practice provides an example of how meaningful learning opportunities can be used to prepare nurses for the challenges they will face as collaborative team members in their palliative clinical practice.
de Araújo, Monica Martins Trovo; da Silva, Maria Júlia Paes
The objective of this study was to know the expectations of patients who are in palliative care regarding communication with the nursing team. The data were collected during the first semester of 2005 through half-structured interviews among 39 oncological patients with no healing prognosis subjected to palliative chemotherapy in a hospital institution of the city of São Paulo. After transcription of the speeches, the data were analyzed according to the methodology of content analysis. From the interviewees' speeches four categories emerged. Interpersonal communication proved to be an important attribution to palliative care, with particular attention given to the professional's nonverbal signs for establishing a link of trust, the need for a compassionate presence, the desire not to focus the interaction and the relationship only on the disease and on death and to concentrate instead on cheerful verbal communication favoring optimism and good humor.
Abudari, Gassan; Zahreddine, Hassan; Hazeim, Hassan; Assi, Mohammad Al; Emara, Sania
Background Palliative care is not yet integrated into the health-care system in Saudi Arabia. King Faisal Specialist Hospital and Research Centre-Riyadh (KFSH&RC-Riyadh) is a tertiary care facility and regional cancer centre in Saudia Arabia with a highly multinational nursing workforce. Little is known about these nurses' knowledge of and attitudes towards palliative care. Aim To determine the palliative care knowledge and attitudes of the nursing workforce of KFSH&RC-Riyadh and any influencing factors. Method A questionnaire including demographic data, the Palliative Care Quiz for Nurses (PCQN), and Frommelt Attitude Toward Care of the Dying scale (FATCOD) was completed by 395 staff nurses from 19 countries. Results The nurses scored a mean of 111.66 out of 150 on the FATCOD scale and of 9.06 out of 20 on the PCQN. These scores indicate moderate attitudes towards but a knowledge deficit regarding palliative care. The nurses' palliative care training and years of nursing experience significantly affected the scores. The level of palliative care integration in the nurses' home countries was the most significant factor in multiple regression tests. Conclusion Palliative care integration into the health-care system of the country in which nurses train significantly influences their knowledge of and attitudes towards palliative care. Incorporating palliative care into nursing education might promote positive attitudes towards palliative care in nurses while enhancing their knowledge and skills.
van der Steen, Jenny T; Radbruch, Lukas; de Boer, Marike E; Jünger, Saskia; Hughes, Julian C; Larkin, Phil; Gove, Dianne; Francke, Anneke L; Koopmans, Raymond T C M; Firth, Pam; Volicer, Ladislav; Hertogh, Cees M P M
People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision. To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations. Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable. Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.
Full Text Available BackgroundPalliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. Globally, 98% of children who need palliative care live in low- or middle-income countries, where there are very few palliative care services available. There is limited evidence describing the practical considerations for the development and implementation of sustainable and cost-effective palliative care services in developing countries.ObjectivesOur aim is to describe the key considerations and initiatives that were successful in planning and implementing a hospital-based pediatric palliative care service specifically designed for a resource-limited setting.SettingBangabandu Sheikh Mujib Medical University (BSMMU is a tertiary referral hospital in Bangladesh. Local palliative care services are very limited and focused on adult patients. In partnership with World Child Cancer, a project establishing a pediatric palliative care service was developed for children with cancer at BSMMU.ResultsWe describe four key elements which were crucial for the success of this program: (1 raising awareness and sensitizing hospital administrators and clinical staff about pediatric palliative care; (2 providing education and training on pediatric palliative care for clinical staff; (3 forming a pediatric palliative care team; and (4 collecting data to characterize the need for pediatric palliative care.ConclusionThis model of a hospital-based pediatric palliative care service can be replicated in other resource-limited settings and can be expanded to include children with other life-limiting conditions. The development of pilot programs can generate interest among local physicians to become trained in pediatric palliative care and can be used to advocate for the palliative care needs of children.
Grønvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette
Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients...
As the hospice care setting becomes more racially and ethnically diverse, attending to the different conditions and needs of various groups is essential to providing optimal care. African Americans make up only a small percentage of hospice users in the United States. This article highlights barriers associated with the underenrollment of African Americans into hospice and palliative care programs. A thorough analysis of the literature was conducted to define hospice and palliative care and assess circumstances that impact the use of hospice services by African Americans. Many African Americans are not choosing hospice care because of cultural issues or knowledge deficits, whether through lack of communication or low literacy. Healthcare providers can begin by familiarizing themselves with hospice organizations and developing and putting into practice strategies to communicate with and educate patients and families about hospice care in a culturally sensitive manner.
Bakitas, Marie A; Elk, Ronit; Astin, Meka; Ceronsky, Lyn; Clifford, Kathleen N; Dionne-Odom, J Nicholas; Emanuel, Linda L; Fink, Regina M; Kvale, Elizabeth; Levkoff, Sue; Ritchie, Christine; Smith, Thomas
Many of the world's population live in rural areas. However, access and dissemination of the advances taking place in the field of palliative care to patients living in rural areas have been limited. We searched 2 large databases of the medical literature and found 248 relevant articles; we also identified another 59 articles through networking and a hand search of reference lists. Of those 307 articles, 39 met the inclusion criteria and were grouped into the following subcategories: intervention (n = 4), needs assessment (n = 2), program planning (n = 3), program evaluation (n = 4), education (n = 7), financial (n = 8), and comprehensive/systematic literature reviews (n = 11). We synthesized the current state of rural palliative care research and practice to identify important gaps for future research. Studies were conducted in the United States, Australia, Canada, Africa, Sweden, and India. Two randomized control trials were identified, both of which used telehealth approaches and had positive survival outcomes. One study demonstrated positive patient quality of life and depression outcomes. Research to guide rural palliative care practice is sparse. Approaches to telehealth, community- academic partnerships, and training rural health care professionals show promise, but more research is needed to determine best practices for providing palliative care to patients living in rural settings.
Wei, Randy L; Colbert, Lauren E; Jones, Joshua; Racsa, Margarita; Kane, Gabrielle; Lutz, Steve; Vapiwala, Neha; Dharmarajan, Kavita V
The purpose of this study was to assess the state of palliative and supportive care (PSC) and palliative radiation therapy (RT) educational curricula in radiation oncology residency programs in the United States. We surveyed 87 program directors of radiation oncology residency programs in the United States between September 2015 and November 2015. An electronic survey on PSC and palliative RT education during residency was sent to all program directors. The survey consisted of questions on (1) perceived relevance of PSC and palliative RT to radiation oncology training, (2) formal didactic sessions on domains of PSC and palliative RT, (3) effective teaching formats for PSC and palliative RT education, and (4) perceived barriers for integrating PSC and palliative RT into the residency curriculum. A total of 57 responses (63%) was received. Most program directors agreed or strongly agreed that PSC (93%) and palliative radiation therapy (99%) are important competencies for radiation oncology residents and fellows; however, only 67% of residency programs had formal educational activities in principles and practice of PSC. Most programs had 1 or more hours of formal didactics on management of pain (67%), management of neuropathic pain (65%), and management of nausea and vomiting (63%); however, only 35%, 33%, and 30% had dedicated lectures on initial management of fatigue, assessing role of spirituality, and discussing advance care directives, respectively. Last, 85% of programs reported having a formal curriculum on palliative RT. Programs were most likely to have education on palliative radiation to brain, bone, and spine, but less likely on visceral, or skin, metastasis. Residency program directors believe that PSC and palliative RT are important competencies for their trainees and support increasing education in these 2 educational domains. Many residency programs have structured curricula on PSC and palliative radiation education, but room for improvement exists in
Wysham, Nicholas G; Hochman, Michael J; Wolf, Steven P; Cox, Christopher E; Kamal, Arif H
Quality metrics for intensive care unit (ICU)-based palliative care have been proposed, but it is unknown how consultative palliative care can contribute to performance on these measures. Assess adherence to proposed quality metrics of ICU-based palliative care by palliative care specialists. Surrogates for 9/14 patient-level quality metrics were assessed in all patients who received an initial palliative care specialist consult while in an ICU from 10/26/2012 to 1/16/2015 in the Global Palliative Care Quality Alliance, a nationwide palliative care quality registry. Two hundred fifty-four patients received an initial palliative care consultation in an ICU setting. Mean (SD) age was 67.5 (17.3) years, 52% were female. The most common reasons for consultation were symptom management (33%) and end-of-life transition (24%). Adherence to ICU quality metrics for palliative care was variable: clinicians documented presence or absence of advance directives in 36% of encounters, assessed pain in 52.0%, dyspnea in 50.8%, spiritual support in 62%, and reported an intervention for pain in 100% of patients with documented moderate to severe intensity pain. Palliative care consultations in an ICU setting are characterized by variable adherence to candidate ICU palliative care quality metrics. Although symptom management was the most common reason for palliative care consultation, consultants infrequently documented symptom assessments. Palliative care consultants performed better in offering spiritual support and managing documented symptoms. These results highlight specific competencies of consultative palliative care that should be complimented by ICU teams to ensure high-quality comprehensive care for the critically ill. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Meier, Diane E
Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Findings: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. PMID:21933272
Meier, Diane E
A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. © 2011 Milbank Memorial Fund. Published by Wiley Periodicals Inc.
Kluger, Benzi M; Persenaire, Michael J; Holden, Samantha K; Palmer, Laura T; Redwine, Hannah; Berk, Julie; Anderson, C Alan; Filley, Christopher M; Kutner, Jean; Miyasaki, Janis; Carter, Julie
There is growing interest in the application of palliative care principles to improve care for patients and families affected by neurologic diseases. We developed an interdisciplinary outpatient clinic for patients and families affected by neurologic disorders to better address the problems faced by our highest need patients. We have developed and improved this program over the past three years and share several of our most important lessons as well as ongoing challenges and areas where we see our clinic evolving in the future. We provide a description of our clinic logistics, including key steps in the initiation of the clinic, and provide descriptions from similar clinics at other institutions to demonstrate some of the variability in this growing field. We also provide results from a formal one-year quality improvement project and a one-year retrospective study of patients attending this clinic. Our clinic has grown steadily since its inception and maintains high satisfaction ratings from patients, caregivers, and referring providers. To maintain standardized and efficient care we have developed materials for patients and referring physicians as well as checklists and other processes used by our interdisciplinary team. Feedback from our quality improvement project helped define optimal visit duration and refine communication among team members and with patients and families. Results from our chart review suggest our clinic influences advance care planning and place of death. Common referral reasons include psychosocial support, complex symptom management, and advance care planning. Current challenges for our clinic include developing a strategy for continued growth, creating a sustainable financial model for interdisciplinary care, integrating our services with disease-specific sections, improving primary palliative care knowledge and skills within our referral base, and building effective alliances with community neurologists, geriatrics, primary care, nursing
Haun, Markus W; Estel, Stephanie; Rücker, Gerta; Friederich, Hans-Christoph; Villalobos, Matthias; Thomas, Michael; Hartmann, Mechthild
Incurable cancer, which often constitutes an enormous challenge for patients, their families, and medical professionals, profoundly affects the patient's physical and psychosocial well-being. In standard cancer care, palliative measures generally are initiated when it is evident that disease-modifying treatments have been unsuccessful, no treatments can be offered, or death is anticipated. In contrast, early palliative care is initiated much earlier in the disease trajectory and closer to the diagnosis of incurable cancer. To compare effects of early palliative care interventions versus treatment as usual/standard cancer care on health-related quality of life, depression, symptom intensity, and survival among adults with a diagnosis of advanced cancer. We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, OpenGrey (a database for grey literature), and three clinical trial registers to October 2016. We checked reference lists, searched citations, and contacted study authors to identify additional studies. Randomised controlled trials (RCTs) and cluster-randomised controlled trials (cRCTs) on professional palliative care services that provided or co-ordinated comprehensive care for adults at early advanced stages of cancer. We used standard methodological procedures as expected by Cochrane. We assessed risk of bias, extracted data, and collected information on adverse events. For quantitative synthesis, we combined respective results on our primary outcomes of health-related quality of life, survival (death hazard ratio), depression, and symptom intensity across studies in meta-analyses using an inverse variance random-effects model. We expressed pooled effects as standardised mean differences (SMDs, or Hedges' adjusted g). We assessed certainty of evidence at the outcome level using GRADE (Grading of Recommendations Assessment, Development, and
Hutt, Evelyn; Albright, Karen; Dischinger, Hannah; Weber, Mary; Jones, Jacqueline; O'Toole, Thomas P
Veterans who nearing the end of life (EOL) in unstable housing are not adequately served by current palliative care or homeless programs. Multidisciplinary focus groups, interviews with community and Veterans Affairs (VA) leaders and with 29 homeless veterans were conducted in five cities. A forum of national palliative and homelessness care leaders (n=5) and representatives from each focus group (n=10), then convened. The forum used Nominal Group Process to suggest improvements in EOL care for veterans without homes. Modified Delphi Process was used to consolidate and prioritize recommendations during two subsequent tele-video conferences. Qualitative content analysis drew on meeting transcripts and field notes. The Forum developed 12 recommendations to address the following barriers: (1) Declining health often makes independent living or plans to abstain impossible, but housing programs usually require functional independence and sobriety. (2) Managing symptoms within the homelessness context is challenging. (3) Discontinuities within and between systems restrict care. (4) VA regulations challenge collaboration with community providers. (5) Veterans with unstable housing who are at EOL and those who care for them must compete nationally for prioritization of their care. Care of veterans at EOL without homes may be substantially improved through policy changes to facilitate access to appropriate housing and care; better dissemination of existing policy; cross-discipline and cross-system education; facilitated communication among VA, community, homeless and EOL providers; and pilot testing of VA group homes or palliative care facilities that employ harm reduction strategies.
Dean, Ruth Anne Kinsman; Gregory, David M
Humor and laughter are present in most of human interaction. Interactions in health care settings are no exception. Palliative care practitioners know from experience that humor and laughter are common in palliative care despite the seriousness of the care context. Research establishing the significance of humor in care of the dying is limited. Clinical ethnography conducted in a 30-bed inpatient palliative care unit served as the means of exploring the functions of humor in care of the dying. Clinical ethnography is intended for examination of the human experience of illness or of caregiving in an interpersonal context (Kleinman, 1992). The method emphasizes the subjective experience and the realm of communication and interaction for both patients and caregivers. Data were collected through participant observation, informal interviews with patients and families, and semistructured interviews with members of the health care team. Humor and laughter were widespread and important in the research setting. An overall attitude of good humor prevailed. Within that atmosphere, humor served myriad functions. Functions were identified in three overarching themes; building relationships, contending with circumstances, and expressing sensibility. Humor among patients, families, and staff most commonly served to build therapeutic relationships, relieve tension, and protect dignity and a sense of worth. Humor was particularly significant in maintaining collegial relationships, managing stressful situations, and maintaining a sense of perspective. Findings established the significance of humor and laughter as humanizing dimensions of care of the dying and contributes to the volume of research supporting evidence-based practice.
Simpson, Mary Louisa; Berryman, Kay; Oetzel, John; Iti, Tiwai; Reddy, Rangimahora
Low utilization of palliative care services by Māori remains despite increases in services designed to meet Māori needs. The purpose of this study is to explore palliative care information brochures in the context of Māori principles of well-being and communication protocols, and health literacy. We examined 99 brochures from palliative care services in New Zealand and held two focus groups with 12 Māori elders (kaumātua) and extended family (whanau) members. Taking a cultural-discursive approach incorporating Māori worldviews, we analysed textual and conceptual features of the brochures. The findings centred on cultural connection and disconnection within the brochures and serve as a critique of the prominent messages currently presented in these brochures. The findings raise questions about the capacity of agencies to convey culturally resonant messages to kaumātua and their whānau. We identify implications of palliative care brochures for health literacy of provider organizations as well as kaumātua and whanau. © The Author 2015. Published by Oxford University Press. All rights reserved. For Permissions, please email: email@example.com.
Gonçalves, F; Bento, M J; Alvarenga, M; Costa, I; Costa, L
The main objective of this study is to validate a Consciousness Scale for palliative care. The scale was named Consciousness Scale for palliative care (CSPC). The validation had two phases: 1) face validity--the scale was assessed by seven healthcare professionals, both doctors and nurses, experienced in palliative care; 2) reliability and construct validity--performed by four investigators, two nurses and two doctors. The construct validation was performed by comparing the CSPC with a Visual Analogue Scale (VAS) of 100 mm, anchored in the terms 'awake' and 'unarousable', and then with the Glasgow Coma Scale (GCS). In this study, all four observers completed 44 periods of observation relative to 38 patients resulting in a total of 176 observations. In the phase of face validation, there were no discrepancies in relation to the issue: the scale provides measures for measurement; the scale can be useful to clinical practice; the scale can improve communication among professionals and the scale is easy to use. As a measure of internal consistency, Cronbach's alpha was found to be very high (0.99). The inter-rater reliability was also very high with an intraclass correlation coefficient of 0.99 (P consciousness in palliative care patients. It is very ease to use, not time consuming and can be used with minimal training. Communication between professionals can be improved in the clinical setting and in the research environment.
Ayed, Ahmad; Sayej, Sumaya; Harazneh, Lubna; Fashafsheh, Imad; Eqtait, Faeda
Background: Palliative care (PC) is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems like physical, psychosocial and…
Adriaansen, M.J.M.; Achterberg, T. van; Borm, G.F.
AIM: This paper reports a study to determine the effectiveness of a postqualification course in palliative care in terms of increased knowledge, insight and self-efficacy among Registered and Licensed Practical Nurses. BACKGROUND: The importance of measuring the effectiveness of postqualification
to affirm life while recognizing death as a normal process. In a study among nurses in Lebanon, 84.6% of them recognized this objective, a finding at variance from 62.5% found among our respondents. The belief that palliative care is mainly for cancer patients was again reflected in our study. However, it is interesting to ...
Quintini, Didier; Vitale, Claire; Gaide, Michelle; Surdej, Frédérique; Salas, Sébastien
In our society, hypnosis sometimes has a negative, distorted image. For several years now it has become more widespread in the healthcare field and its use has increased in caring for symptoms such as pain and anxiety. It can be of great help in palliative situations. Copyright © 2017 Elsevier Masson SAS. All rights reserved.
as an individual with physical ,psychological, and. 7 social needs .The World Health Organization. (WHO) has named palliative care as one of four strategies to .... Schug S.A, Zech D, Grond S, Jung H ,Meuser. T ,Stible B. A. Long Term use of morphine in cancer patients. J Pain Symptom Manage,. 1992;7: 259- 266. 11.
Background: This paper describes cancer burden and compares characteristics of cancer patients enrolled at 2 palliative care facilities of contrasting resources ... Methods: Data on all cancer patients registered between October 2010 and October 2015 at Tiyanjane Clinic (at Queen Elizabeth Central Hospital, Blantyre) and ...
Palliative care in children with advanced HIV/AIDS. R Chunda, V Lavy. Abstract. No Abstract. Malawi Medical Journal Vol.17(2) 2005: 51-52. Full Text: EMAIL FREE FULL TEXT EMAIL FREE FULL TEXT · DOWNLOAD FULL TEXT DOWNLOAD FULL TEXT · http://dx.doi.org/10.4314/mmj.v17i2.10878.
Adriaansen, Marian J. M.; Frederiks, Carla M. A.
A postgraduate course on palliative nursing includes four class sessions and four peer review meetings in which students discuss case studies and assignments. The course is intended to prepare nurses for the bureaucratic, biomedical, social-therapeutic, and informal roles of terminal care. (SK)
Olthuis, G.J.; Dekkers, W.J.M.
The aim of this article is to explore an ethical view of professional competence by examining the professional competence of physicians in the context of palliative care. A discussion of the four dimensions of professional competence--knowledge, technical skills, relationships, and affective and
Kane, Pauline M; Daveson, Barbara A; Ryan, Karen; McQuillan, Regina; Higginson, Irene J; Murtagh, Fliss E M
Over the history of palliative care provision in Ireland, services have predominantly provided care to those with cancer. Previous estimates of palliative care need focused primarily on specialist palliative care and included only a limited number of nonmalignant diseases. The primary aim of this study was to estimate the potential population with generalist and/or specialist palliative care needs in Ireland using routine mortality data inclusive of nonmalignant conditions. The secondary aim was to consider the quality of Irish data available for this population-based estimate. Irish routine mortality data (2007-2011) were analyzed for malignant and nonmalignant conditions recognized as potentially requiring palliative care input, using specific International Statistical Classification of Diseases and Related Health Problems-10th Revision codes. The method developed by Murtagh et al. was used to give a population-based palliative care needs estimate, encompassing generalist and specialist palliative care need. During the period 2007-2011, there were 141,807 deaths. Eighty percent were from conditions recognized as having associated palliative care needs, with 41,253 (30%) deaths from cancer and 71,226 (50%) deaths from noncancer conditions. The majority of deaths, 81% (91,914), were among those ≥65 years. There was a 13.9% (901) increase in deaths of those ≥85 years. Deaths from dementia increased by 51.3%, with an increase in deaths from neurodegenerative disease (42.8%) and cancer (9.5%). Future palliative care policy decisions in Ireland must consider the rapidly aging Irish population with the accompanying increase in deaths from cancer, dementia, and neurodegenerative disease and associated palliative care need. New models of palliative care may be required to address this. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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.
Malloy, Pam; Paice, Judith; Coyle, Nessa; Coyne, Patrick; Smith, Thomas; Ferrell, Betty
Many challenges exist when providing international education to those who care for people at the end of life. Though issues related to culture and language may vary, the one commonality that crosses all nations is that its people die. In general, societies seek to provide the best care they are trained to give. Many have few resources to provide this care well. Traditions of the past influence norms and dictate policies and procedures of the present. Since its inception in 2000, the End-of-Life Nursing Education Consortium Project has provided palliative care education to nurses and other members of the interdisciplinary team in six of the seven continents. This article describes the efforts of this project to improve education around the globe, with the goal of providing excellent, compassionate palliative care, irrespective of location, financial status, political views, religion, race, and/or ethnicity. © The Author(s) 2014.
Chover-Sierra, Elena; Martínez-Sabater, Antonio; Lapeña-Moñux, Yolanda
to determine the level of knowledge in palliative care of nursing staff at a Spanish tertiary care hospital. descriptive, cross-sectional study. Data were collected about the results of the Spanish version of the Palliative Care Quiz for Nurses (PCQN), sociodemographic aspects, education level and experience in the field of palliative care. Univariate and bivariate descriptive analysis was applied. Statistical significance was set at p palliative care and 64.2% educational background (mainly basic education). The mean percentage of hits on the quiz was 54%, with statistically significant differences in function of the participants' education and experience in palliative care. although the participants show sufficient knowledge on palliative care, they would benefit from a specific training program, in function of the mistaken concepts identified through the quiz, which showed to be a useful tool to diagnose professionals' educational needs in palliative care.
Sawatzky, Richard; Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally
A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration.
Full Text Available Palliative care in Nepal has been developing over the last 20 years, led by pioneering doctors and nurses who have gained experience in the specialty, often while working overseas, or who have had the opportunity to do clinical attachments abroad. Recently, in collaboration with international palliative care specialists, a national strategy has been developed and adopted to guide future development so that palliative care for all who need it can be provided. This article explores the faith-based context for palliative care and describes the particular issues Nepal faces, the work of Christian mission organizations in supporting palliative care development, and the need for religious and cultural sensitivity.
Montagnini, Marcos; Lodhi, Mohammed; Born, Wendi
In the supportive oncology and palliative care settings, rehabilitation interventions are often overlooked and underutilized, despite high levels of functional disability in these patients. As a result, little is known about the utilization or effectiveness of rehabilitation interventions in palliative care populations. To assess the utilization of physical therapy (PT) in a hospital-based palliative care unit, to characterize functional disabilities in patients who received PT, and to identify factors related to functional improvement following a course of PT. Retrospective chart review of 100 patients (mean age 70 years, 97% male) discharged from the Milwaukee Veterans Hospital Palliative Care unit over 15 months. Activities of daily living (ADL) performance scores were recorded on admission, at 2 weeks, and at completion of the PT program and correlated with demographic and disease-related variables. Thirty-seven patients received a formal PT assessment, and 18 patients underwent PT. The most common functional disabilities in patients who received PT were deconditioning, pain, imbalance, and focal weakness. Ten patients demonstrated improvement in ADL function at 2 weeks. Six patients completed the course of PT. Albumin was significantly correlated with functional improvement. When controlling for albumin, patients with diagnosis of dementia were more likely to show improvement in functional status than patients without a dementia diagnosis. PT assessment and utilization were uncommon in this group. When utilized, PT benefited 56% of patients. Factors related to functional improvement following a PT course were a higher albumin level and a diagnosis of dementia. Prospective trials of PT in palliative care patients are needed to better define response rate and predictors of response.
Zhang, Haipeng; Liu, David; Marks, Sean; Rickerson, Elizabeth M; Wright, Adam; Gordon, William J; Landman, Adam
Fast Facts Mobile (FFM) was created to be a convenient way for clinicians to access the Fast Facts and Concepts database of palliative care articles on a smartphone or tablet device. We analyzed usage patterns of FFM through an integrated analytics platform on the mobile versions of the FFM application. The primary objective of this study was to evaluate the usage data from FFM as a way to better understand user behavior for FFM as a palliative care educational tool. This is an exploratory, retrospective analysis of de-identified analytics data collected through the iOS and Android versions of FFM captured from November 2015 to November 2016. FFM App download statistics from November 1, 2015, to November 1, 2016, were accessed from the Apple and Google development websites. Further FFM session data were obtained from the analytics platform built into FFM. FFM was downloaded 9409 times over the year with 201,383 articles accessed. The most searched-for terms in FFM include the following: nausea, methadone, and delirium. We compared frequent users of FFM to infrequent users of FFM and found that 13% of all users comprise 66% of all activity in the application. Demand for useful and scalable tools for both primary palliative care and specialty palliative care will likely continue to grow. Understanding the usage patterns for FFM has the potential to inform the development of future versions of Fast Facts. Further studies of mobile palliative care educational tools will be needed to further define the impact of these educational tools.
McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin
Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…
Krakauer, Eric L; Thinh, Dang Huy Quoc; Khanh, Quach Thanh; Huyen, Hoang Thi Mong; Tuan, Tran Diep; The, Than Ha Ngoc; Cuong, Do Duy; Thuan, Tran Van; Yen, Nguyen Phi; Van Anh, Pham; Cham, Nguyen Thi Phuong; Doyle, Kathleen P; Yen, Nguyen Thi Hai; Khue, Luong Ngoc
Palliative care began in Vietnam in 2001, but steady growth in palliative care services and education commenced several years later when partnerships for ongoing training and technical assistance by committed experts were created with the Ministry of Health, major public hospitals, and medical universities. An empirical analysis of palliative care need by the Ministry of Health in 2006 was followed by national palliative care clinical guidelines, initiation of clinical training for physicians and nurses, and revision of opioid prescribing regulations. As advanced and specialist training programs in palliative care became available, graduates of these programs began helping to establish palliative care services in their hospitals. However, community-based palliative care is not covered by government health insurance and thus is almost completely unavailable. Work is underway to test the hypothesis that insurance coverage of palliative home care not only can improve patient outcomes but also provide financial risk protection for patients' families and reduce costs for the health care system by decreasing hospital admissions near the end of life. A national palliative care policy and strategic plan are needed to maintain progress toward universally accessible cost-effective palliative care services. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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. Copyright © 2012 Elsevier Ltd. All rights reserved.
Potter, Gail; Pesut, Barbara; Hooper, Brenda Pherne; Erbacker, Lynnelle
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. Copyright 2015, SLACK Incorporated.
This case study examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area (GTA). Because of changing demographic trends and ethnic minorities underutilizing hospice palliative care services, this research examined the current state of culturally competent care in a hospice setting, and the challenges to providing culturally competent care in a hospice in the GTA. A case study was conducted with a hospice and included in-depth interviews with 14 hospice volunteers. The findings reveal that volunteers encountered cultural clashes when their level of cultural competency was weak. Second, volunteers revealed there was a lack of adequate cultural competency training with their hospice, and finally, there was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers.
Trovo de Araújo, Monica Martins; da Silva, Maria Júlia Paes
The objective of this study is to verify the relevance and utilization of communication strategies in palliative care. This is a multicenter qualitative study using a questionnaire, performed from August of 2008 to July of 2009 with 303 health care professionals who worked with patients receiving palliative care. Data were subjected to descriptive statistical analysis. Most participants (57.7%) were unable to state at least one verbal communication strategy, and only 15.2% were able to describe five signs or non-verbal communication strategies. The verbal strategies most commonly mentioned were those related to answering questions about the disease/treatment. Among the non-verbal strategies used, the most common were affective touch, looking, smiling, physical proximity, and careful listening. Though professionals have assigned a high degree of importance to communication in palliative care, they showed poor knowledge regarding communication strategies. Final considerations include the necessity of training professionals to communicate effectively in palliative care.
Luckett, Tim; Phillips, Jane; Agar, Meera; Virdun, Claudia; Green, Anna; Davidson, Patricia M
Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals' changing needs and preferences over time. Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its rapid methodology and focus on model
Inbadas, Hamilton; Zaman, Shahaduz; Whitelaw, Alexander; Clark, David
Background: The production of 'declarations' (formal, public statements to influence policy, raise awareness and call others to action) is increasing in the end of life care field. Several declarations have been issued on ‘assisted dying/euthanasia’ but have not yet been analysed systematically.\\ud Aim: To map the emergence of assisted dying/euthanasia declarations in the international context and to establish the representation of palliative care in these declarations.\\ud Methods: A two stag...
Fox, Siobhan; Cashell, Alison; Kernohan, W George; Lynch, Marie; McGlade, Ciara; O'Brien, Tony; O'Sullivan, Sean S; Foley, Mary J; Timmons, Suzanne
Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care. This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland. People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.
McCarthy, Ian M; Robinson, Chessie; Huq, Sakib; Philastre, Martha; Fine, Robert L
To quantify the cost savings of palliative care (PC) and identify differences in savings according to team structure, patient diagnosis, and timing of consult. Hospital administrative records on all inpatient stays at five hospital campuses from January 2009 through June 2012. The analysis matched PC patients to non-PC patients (separately by discharge status) using propensity score methods. Weighted generalized linear model regressions of hospital costs were estimated for the matched groups. Data were restricted to patients at least 18 years old with inpatient stays of between 7 and 30 days. Variables available included patient demographics, primary and secondary diagnoses, hospital costs incurred for the inpatient stay, and when/if the patient had a PC consult. We found overall cost savings from PC of $3,426 per patient for those dying in the hospital. No significant cost savings were found for patients discharged alive; however, significant cost savings for patients discharged alive could be achieved for certain diagnoses, PC team structures, or if consults occurred within 10 days of admission. Appropriately selected and timed PC consults with physician and RN involvement can help ensure a financially viable PC program via cost savings to the hospital. © Health Research and Educational Trust.
Akin Korhan, Esra; Üstün, Çağatay; Uzelli Yilmaz, Derya
Respecting and valuing an individual's existential dignity forms the basis of nursing and medical practice and of nursing care. The objective of the study was to determine the approach to human dignity that nurses and physicians have while providing palliative care. This qualitative study was performed using a phenomenological research design. In-depth semistructured interviews were conducted in 9 nurses and 5 physicians with human dignity approach in palliative care. Following the qualitative Colaizzi method of analyzing the data, the statements made by the nurses and physicians during the interviews were grouped under 8 categories. Consistent with the questionnaire format, 8 themes and 43 subthemes of responses were determined describing the human dignity of the nurse and the physicians. The results of the study showed that in some of the decisions and practices of the nurses giving nursing care and physicians giving medical care to palliative care patients, while they displayed ethically sensitive behavior, on some points, they showed approaches that violated human dignity and showed lack of awareness of ethical, medical, and social responsibilities.
Duc, Jacqueline K; Herbert, Anthony Robert; Heussler, Helen S
Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required. © 2017 John Wiley & Sons Ltd.
Cronfalk, Berit Seiger; Ternestedt, Britt-Marie; Larsson, Lise-Lotte Franklin; Henriksen, Eva; Norberg, Astrid; Österlind, Jane
This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care. Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used. The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people. Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.
Khraisat, Omar Mohammad; Hamdan, Mahmoud; Ghazzawwi, Mohannad
Nurses are the heart of the palliative care team who provide high standards of care since they spend the longest time with patients. However, lack of adequate knowledge of palliative care is considered as one of the main obstacles to palliative care improvement. A survey was conducted to assess Saudi nursing students' knowledge about palliative care. Using a descriptive design, 154 students who enrolled in first year and who will graduate within 1 year were surveyed in a nursing college located in Riyadh, the capital of Saudi Arabia. The Palliative Care Quiz for Nursing (PCQN) was used to assess students' knowledge. The sample mean age was 22.1 (standard deviation (SD): 2.2), and most of the students were predominately female (93; 60.4%) and the majority were senior students who will be graduated within the current academic year (105; 68.2%). The total mean score of palliative care knowledge was low at 7.30 (SD: 0.56; range: 0-13), and the number of correctly answered statements ranged from 16 (10.4%, statement no. 7) to 91 (59.1%, statement no. 18). Eleven misconceptions about palliative care among participants are conceptually categorized into 3categories: principle and philosophy of palliative care, pain and symptom management, and psychological and spiritual care. Integrating palliative care education within the nursing programs is the backbone to improve nursing students' knowledge, namely, in principles of palliative care and symptom management.
Abstract This article presents a rapid review of the published literature and available resources for educating Canadian physicians to provide palliative and end-of-life care. Several key messages emerge from the review. First, there are many palliative care educational resources already available for Canadian physicians. Second, the many palliative care education resources are often not used in physician training. Third, we know that some palliative care educational interventions are inexpensive and scalable, while others are costly and time-consuming; we know very little about which palliative care educational interventions impact physician behavior and patient care. Fourth, two palliative care competency areas in particular can be readily taught: symptom management and communication skill (e.g., breaking bad news and advance care planning). Fifth, palliative care educational interventions are undermined by the “hidden curriculum” in medical education; interventions must be accompanied by continuing education and faculty development to create lasting change in physician behavior. Sixth, undergraduate and postgraduate medical training is shifting from a time-based training paradigm to competency-based training and evaluation. Seventh, virtually every physician in Canada should be able to provide basic palliative care; physicians in specialized areas of practice should receive palliative care education that is tailored to their area, rather than generic educational interventions. For each key message, one or more implications are provided, which can serve as recommendations for a framework to improve palliative care as a whole in Canada. PMID:29283871
Price, Jayne; Janicki, Jacqueline S; McKee, Heather; Nurse, Sharon; Gray, Eileen
Education is viewed as central to improving future palliative care for children and families across all countries. International education initiatives will ensure practitioners are aware of global health issues and can provide culturally sensitive care. Creative and innovative means of meeting such directives are required to achieve meaningful student learning. This paper focuses on one innovation, a children's palliative care workshop using case studies as a teaching method, with nursing students from the USA and nursing and midwifery students from the UK. Key learning points arising from student evaluation were recorded under three main themes, these were: differences across countries, similarities across countries, and making learning fun and memorable. Findings indicated that this joint learning activity was viewed positively by all students and has enabled them to learn with and from each other, potentially impacting on their future practice.
Lee, Ellen E; Chang, Beverly; Huege, Steven; Hirst, Jeremy
Because of the rapidly growing older population and increases in longevity, rates of dementia have been rising. Clinical challenges of treating dementia include limited resources and lack of curative therapies. Palliative care approaches improve quality of life and alleviate suffering for dementia patients at the end of life, although implementation may be limited by societal acceptance and feasibility. This review examines the published literature on pain assessments, pain and behavior interventions, tools for advanced care planning, and clinical concerns in dementia patients. Ultimately, modification of the traditional palliative care model may improve outcomes and functioning for dementia patients at all stages of their illness. Copyright © 2017 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.
Full Text Available Palliative care is a growing area of practice throughout the world and its promotion relies on adequately trained health care professionals. However, there are only a limited number of postgraduate academic courses or clinical training opportunities available, especially in resource challenged areas of the Asia Pacific region. This article outlines a creative endeavour between Flinders University, Adelaide Australia, the Singapore National Cancer Centre and the Asia Pacific Hospice and Palliative Care Network to provide an educational opportunity for students from the region. The strengths of the programme include its strong theoretical and evidenced-based framework, its multidisciplinary inclusiveness and its innovative and interactive teaching style. The main teaching challenge for the teaching team is to deliver culturally appropriate curricula to students from diverse cultural and linguistic backgrounds. This postgraduate programme is an important initiative for the region and for the development of future leaders and pioneers in the discipline.
Omilion-Hodges, Leah M; Swords, Nathan M
Though research has begun to highlight the centrality of communication in palliative care, studies have yet to focus on the use of mindful communication. Mindful communication is associated with increases in patient care and decreases in physician burnout. Through in-depth, semi-structured interviews the authors sought mindful communication practices from palliative care leaders in American Hospital Association Circle of Life® award-wining units. Four key mindful communication practices emerged: Know your audience, ask questions, discard scripts, and recognize your role. The discussion articulates how key mindful communication practices may be used as a stage model, where key practices may be used individually or in concert, by sole practitioners or within interdisciplinary teams and by new and seasoned clinicians. Theoretical contributions and areas for future inquiry are also discussed.
Sandsdalen, Tuva; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Wilde-Larsson, Bodil
Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was
Pesut, Barbara; Beswick, Frances; Robinson, Carole A; Bottorff, Joan L
Increasingly, palliative care is being referred to as an essential programme and in some cases as a human right. Once it is recognized as such, it becomes part of the lexicon of social justice in that it can be argued that all members of society should have access to such care. However, this begs the question of how that care should be enacted, particularly in rural and remote areas. This question illustrates some of Friedrich Hayek's critiques of social justice. Hayek has likened social justice to a 'moral stone' arguing that social justice is meaningless to the extent that society is impersonal and as such cannot be just, only those individuals who make up that society can be just. When responsibility for justice is assigned to an impersonal society, ideas of social justice can become a clarion call for whom no one is directly accountable. This opens the door for questionable macro-level political agendas that have no capacity to enact the ideal, and worse, may suppress individual moral acts towards the desired end. Further, acts of interference at the macro level with the ideal of equal opportunity run the risk of disadvantaging other members of society. Instead, he has argued that a better approach lies in finding ways to induce and support individual moral acts that promote the human good. Hayek's arguments are particularly compelling for rural palliative care. In this paper we draw upon data from an ethnographic study in rural palliative care to illustrate the potential misfit between the ethical ideal of palliative care as expressed by rural participants and the narratives of social justice. © 2011 Blackwell Publishing Ltd.
This paper draws upon Australian fieldwork to trace the changing notions of a good death held by hospice and palliative care practitioners. Palliative care practitioners search for an ideology to inform their practice within the context of a complex society for which there is no one good death. Social demographics, the multicultural nature of society and institutional constraints frame the experience of dying in complex ways, while contemporary social responses to dying reflect the uncertainties held by many Australians. Despite the fragmentation evident within contemporary Australian society, the hospice movement in Australia and in other Western contexts has sought to reintroduce a ritual for dying. The good death ideology of the original hospice movement proposed a manner of dying in which open communication and acceptance of death were actively encouraged. The hospice model of a good death, however, has become increasingly inappropriate in the current climate of patient autonomy and consumer choice. The practice of palliative care, a holistic form of care for dying people, which follows the individualistic ethic of choice, has emerged from and replaced the original hospice movement. Consequently, the good death of the original hospice movement has been abandoned in favour of a philosophy of a 'good enough' death. However, what may appear a compromise informed by ethical practice masks a return to routine medical practices and a hierarchy of care which prioritises the physical management of symptoms. It appears that while palliative care practitioners may often fail in their facilitation of a good death for their patients, they can be proactive in alleviating their patients' pain and physical discomfort.
Full Text Available The term burnout, meaning ”professional exhaustion”, was introduced by Herbert Freudenberger in 1974. On May 21, 2014 , the World Health Assembly, the decisional organ of the World Health Organization, voted the resolution for the integration and development of the capacity of palliative care services as a constituent part of the health systems. The resolution represents a major pace in the development of palliative care at world level, once the ministers responsible for the field took upon themselves - by means of information and training programs - the task of services’ development, mainly at community level, the support from the part of the next of kins, the elaboration of educational programs, of guides and clinical protocols for specialists, of instruments for the monitorization of the quality of services provided, an easier access of patients to medication, as well as partnerships with the civil society. Burnout is a state of emotional, mental and physical overfatigue caused by excessive and prolongued stress. It is installed mainly when the person affected with it feels care-worn and uncapable of fulfilling his/her usual duties. As the stress continues, he/she will come to lose the interest or motivation which made him/her assume a certain position in the organizational hierarchy. The burnout phenomenon includes three components: emotional exhaustion, depersonalization and lack of professional accomplishment. The main observations on the phenomenon indicate that, apparently, the burnout level in palliative care is not higher than in other services, such as intensive therapy or surgery. Nevertheless, mention should be made of a characteristic of the palliative care services which influences the burnout level, namely the emotional relation created between the patient and the medical team, as a result of the prolongued duration of the care services
Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne
The terms palliative and end of life care are often used interchangeably and healthcare practitioners may perceive that palliative care is only appropriate during the terminal stages of an illness. This article, the first of two parts, provides healthcare practitioners with an overview of the concept of palliative care. It explains how this can be differentiated from end of life care and how it should be commenced in a timely manner, so that people who are living with dementia can contribute to the planning of their future care and death. The policies and tools used in the provision of palliative and end of life care are discussed, including advance care planning and The Gold Standards Framework. The article is framed in a care home context; there is little research about how to optimise palliative care for people living with dementia in care homes. The second part of this article will discuss end of life care and the best practices for providing end of life care, including nutrition and hydration, oral hygiene, pain management and spiritual care.
Momm, F.; Frommhold, H.; Becker, G.; Ewald, H.; Baumgartner, J.; Adamietz, I.A.
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.) [de
Jackson-Jordan, Elizabeth; Stafford, Cynthia; Stratton, Sara V; Vilagos, TeresaMarie T; Janssen Keenan, Angela; Hathaway, Greg
In 2009 a Consensus Conference of experts in the field of spiritual care and palliative care recommended the inclusion of Board-certified professional chaplains with at least 1,600 hours of clinical pastoral education as members of palliative care teams. This study evaluates a clinical pastoral education residency program's effectiveness in preparing persons to provide spiritual care for those with serious illness and in increasing the palliative care team members' understanding of the chaplain as part of the palliative care team. Results showed chaplain residents felt the program prepared them to provide care for those with serious illness. It also showed that chaplain residents and palliative care team members view spirituality as an integral part of palliative care and see the chaplain as the team member to lead that effort. Suggested program improvements include longer palliative care orientation period, more shadowing with palliative care team members, and improved communication between palliative care and the chaplain residents.
Senthil P Kumar
Full Text Available Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model.
Kumar, Senthil P
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. PMID:21633623
Full Text Available Patients with heart failure have a significant symptom burden and other palliative care needs often over a longer period than patients with cancer. It is acknowledged that this need may be unmet but by how much has not been quantified in primary care data at the population level.This was the first use of Clinical Practice Research Datalink, the world's largest primary care database to explore recognition of the need for palliative care. Heart failure and cancer patients who had died in 2009 aged 18 or over and had at least one year of primary care records were identified. A palliative approach to care among patients with heart failure was compared to that among patients with cancer using entry onto a palliative care register as a marker for a palliative approach to care.Among patients with heart failure, 7% (234/3 122 were entered on the palliative care register compared to 48% (3 669/7 608 of cancer patients. Of heart failure patients on the palliative care register, 29% (69/234 were entered onto the register within a week of their death.This confirms that the stark inequity in recognition of palliative care needs for people with heart failure in a large primary care dataset. We recommend a move away from prognosis based criteria for palliative care towards a patient centred approach, with assessment of and attention to palliative needs including advance care planning throughout the disease trajectory.
Aziz, Noreen M.; Basch, Ethan; Bull, Janet; Cleeland, Charles S.; Currow, David C.; Fairclough, Diane; Hanson, Laura; Hauser, Joshua; Ko, Danielle; Lloyd, Linda; Morrison, R. Sean; Otis-Green, Shirley; Pantilat, Steve; Portenoy, Russell K.; Ritchie, Christine; Rocker, Graeme; Wheeler, Jane L.; Zafar, S. Yousuf; Kutner, Jean S.
Abstract Background Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. Methods A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. Results : The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative group's success. PMID:21105763
Moody, Karen; McHugh, Marlene; Baker, Rebecca; Cohen, Hillel; Pinto, Priya; Deutsch, Stephanie; Santizo, Ruth O; Schechter, Miriam; Fausto, James; Joo, Pablo
The Institute of Medicine and the American Academy of Pediatrics has called for improvement in education and training of pediatricians in pediatric palliative care (PPC). Given the shortage of PPC physicians and the immediate need for PPC medical education, this study reports the outcomes of a problem-based learning (PBL) module facilitated by academic general and subspecialty pediatric faculty (non-PPC specialists) to third year medical students. Objectives/Setting: To test the effectiveness of a PPC-PBL module on third year medical students' and pediatric faculty's declarative knowledge, attitudes toward, perceived exposure, and self-assessed competency in PPC objectives. A PBL module was developed using three PPC learning objectives as a framework: define core concepts in palliative care; list the components of a total pain assessment; and describe key principles in establishing therapeutic relationships with patients. A PPC physician and nurse practitioner guided pediatric faculty on facilitating the PPC-PBL. In Part 1, students identified domains of palliative care for a child with refractory leukemia and self-assigned questions to research and present at the follow-up session. In Part 2, students were expected to develop a care plan demonstrating the three PPC objectives. Measures included a knowledge exam and a survey instrument to assess secondary outcomes. Students' declarative knowledge, perceived exposure, and self-assessed competency in all three PPC learning objectives improved significantly after the PPC-PBL, p = 0.002, p 80%). Students and faculty rated palliative care education as "important or very important" at baseline and follow-up. This study suggests that key concepts in PPC can be taught to medical students utilizing a PBL format and pediatric faculty resulting in improved knowledge and self-assessed competency in PPC.
Dabbouseh, Noura M; Kaushal, Shivtej; Peltier, Wendy; Johnston, Fabian M
To address perspectives of cardiology fellows on the current state of palliative education and palliative and hospice resource utilization within their fellowship experiences. We conducted an online national survey of cardiology fellows during the 2015 to 2016 academic year. Survey questions aimed to assess perceived importance of palliative care education, level of palliative care education during fellowship, and the structure of palliative care support at respondent institutions. Responses were collected anonymously. A total of 519 programs, including subspecialty programs, were contacted. We received 365 responses, a number that represents roughly 14% of all cardiology fellows nationwide during the 2015 to 2016 academic year. Fellows reported discordance in the quality of education between general cardiology and palliative care principles as it relates to care of the patient approaching the end of life. Fellows infrequently received explicit training nor were observed or mentored in delivering end-of-life discussions. Respondents reported an underutilization of palliative care and hospice resources during fellowship training and also a perception that attending faculty were not routinely addressing goals of care. Our survey results highlight a need for enhanced palliative care and end-of-life training experiences for cardiology fellows and also suggest underutilization of hospice and palliative care resources for patients with advanced cardiac diseases. These findings create a platform for future work that might: (1) confirm this training deficit, (2) lead to exploration of educational models that could reconcile this deficit, and (3) potentially help improve palliative care support for patients and families facing advanced heart disease.
Jaarsma, Tiny; Beattie, James M.; Ryder, Mary; Rutten, Frans H.; McDonagh, Theresa; Mohacsi, Paul; Murray, Scott A.; Grodzicki, Thomas; Bergh, Ingrid; Metra, Marco; Ekman, Inger; Angermann, Christiane; Leventhal, Marcia; Pitsis, Antonis; Anker, Stefan D.; Gavazzi, Antonello; Ponikowski, Piotr; Dickstein, Kenneth; Delacretaz, Etienne; Blue, Lynda; Strasser, Florian; McMurray, John
Heart failure is a serious condition and equivalent to malignant disease in terms of symptom burden and mortality. At this moment only a comparatively small number of heart failure patients receive specialist palliative care. Heart failure patients may have generic palliative care needs, such as
Henk van Rijswijk; Esther Stoffers; Anna Beurskens; M. Beckers; F.A. Haarsma; Albine Moser
Background and objective Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the
Steen, J.T. van der; Radbruch, L.; Hertogh, C.M.P.M.; Boer, M.E. de; Hughes, J.C.; Larkin, P.; Francke, A.L.; Jünger, S.; Gove, D.; Firth, P.; Koopmans, R.T.C.M.; Volicer, L.
Background: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. Aim:To define optimal palliative care in dementia. Methods: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries
van der Steen, J.T.; Radbruch, L.; Hertogh, C.M.P.M.; de Boer, M.E.; Hughes, J.C.; Larkin, P.; Francke, A.L.; Junger, S.; Gove, D.; Firth, P.; Koopmans, R.T.C.M.; Volicer, L.
Background: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. Aim: To define optimal palliative care in dementia. Methods: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries
Radbruch, Lukas; Ling, Julie; Hegedus, Katalin; Larkin, Philip
The European Association for Palliative Care (EAPC) represents many thousands of health care workers and volunteers working in or with an interest in palliative care. In 2016, the EAPC has individual members from 48 nations across the world, and collective members from 57 national palliative care associations in 32 European countries. Throughout its history, the EAPC has produced guidance on a range of palliative care issues. The biennial congresses and research congresses and the comprehensive Web site (www.eapcnet.eu) are renowned and well utilized platforms for dissemination and exchange of palliative care information. The EAPC has also published a newsletter specifically for Eastern European and Central Asian countries that has been available in both English and Russian from 2005 to 2012. In addition, for a period of time, a Russian Web site (www.eapcspeaksrussian.eu) was also available. A survey of palliative care in Central and Eastern European nations sponsored by Open Society Foundation's International Palliative Care Initiative found that in most countries, the national language is preferred rather than using English or Russian for the provision of information. Accordingly, the EAPC Web site provides translations of white papers, position papers, and blog posts in a number of languages. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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.
Dean, Ruth Anne Kinsman; Gregory, David M
Humor and laughter are ubiquitous in human interactions. Terminal illness, however, is often accompanied by circumstances of anxiety, fear, and sadness. Hospice/palliative care emphasizes quality of life and the importance of human relationships. In this context, humor finds its place in authentic person-to-person connectedness. This article presents findings from a clinical ethnography that investigated the phenomena of humor and laughter in an inpatient palliative care unit. As a participant observer, the lead author accompanied 6 nurses throughout their day-to-day activities, twice weekly over 12 weeks. In addition to more than 200 hours of fieldwork, informal conversations were held with patients and families and semistructured interviews were conducted with nurses (n = 11), physicians (n = 2), a social worker (n = 1), and a physiotherapist (n = 1). Humor was pervasive, varied in the setting, and occurred across a range of intensities. Both clients and team members used humor to build relationships, contend with circumstances, and express sensibilities. Humor was affected by differences in people, differing circumstances, ethnicity, gender, and degree of stress. Participants relied on intuition as well as a constellation of other factors in discerning whether or not to use humor. Techniques for assessment included identification of cues such as expression in the eyes and timing as indications of receptivity. Combined with caring and sensitivity, humor is a powerful therapeutic asset in hospice/palliative care. It must neither be taken for granted nor considered trivial.
Full Text Available There is a great need for paediatric palliative care (PPC services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 needing specialist services. PC has been identified as important within the global health agenda e.g., within universal health coverage, and a recent Lancet commission report recognised the need for PPC. However, a variety of challenges have been identified to PPC development globally such as: access to treatment, access to medications such as oral morphine, opiophobia, a lack of trained health and social care professionals, a lack of PPC policies and a lack of awareness about PPC. These challenges can be overcome utilising a variety of strategies including advocacy and public awareness, education, access to medications, implementation and research. Examples will be discussed impacting on the provision of PPC in resource-poor settings. High-quality PPC service provision can be provided with resource-poor settings, and there is an urgent need to scale up affordable, accessible, and quality PPC services globally to ensure that all children needing palliative care can access it.
Pastrana, Tania; Torres-Vigil, Isabel; De Lima, Liliana
Recently, the Latin American Association for Palliative Care developed 10 indicators to monitor the development of palliative care and enhance the development of regional and national strategies. To compare the status of palliative care development across Latin American nations using the Latin American Association for Palliative Care indicators and to classify the countries into three levels of palliative care development. A secondary analysis using the following indicators (number of indicators in each category): Policy (1), Education (3), Service Provision (3), and Opioids (3). A Latin American Association for Palliative Care Index was constructed adding the standard score (z-score) of each indicator. Nineteen Spanish and Portuguese-speaking countries of Latin America. Indicators significantly associated with the number of palliative care services per million inhabitants included: the proportion of medical schools with palliative care at the undergraduate level (p = 0.003), the number of accredited physicians working in palliative care (p = 0.001), and opioids consumed per capita (p = 0.032). According to the Latin American Association for Palliative Care Index, Costa Rica registered the highest score (8.1). Three ranking groups were built to measure palliative care development; Costa Rica, Chile, Mexico, and Argentina ranked in the high group, while Bolivia, Honduras, Dominican Republic, and Guatemala ranked in the lowest group. Most of the Latin American Association for Palliative Care indicators are useful for assessing national levels of palliative care development. These indicators may be applicable to other world regions. Additional studies are needed to evaluate the specificity of each indicator. © The Author(s) 2014.
Loetz, Cécile; Müller, Jakob; Frick, Eckhard; Petersen, Yvonne; Hvidt, Niels Christian; Mauer, Christine
The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.
Full Text Available The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient’s needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person’s attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one’s own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.
Kelsall, Kay; Brennan, Ebony; Cole, Teresa
This paper presents the development and implementation of a recurrently funded, rolling, 6-month palliative care secondment programme for NHS community staff nurses based in a rural health economy in Southwest England. The programme is a key tool in a wider development plan for improving access to, and the quality of, palliative and end-of-life care for a dispersed rural population. This is part of a much bigger programme of integration to meet the shared challenges of service capacity, equity, and sustainability that are presented by the geographical and demographical profile of the locality. The 'bigger picture' is defined and set in the context of the national drive and evidence base for integration in order to explain the reasons behind the secondment programme. This is followed by outlining the iterative process of design and implementation--the 'what?' and 'how?'--and key learning points to date are shared.
Full Text Available SUMMARY: Palliative care (PC is a new and developing area. It aims to provide the best possible quality of life for patients with life-limiting diseases. It does not primarily include life-extending therapies, but rather tries to help patients spend the rest of their lives in the best way. PC patients often are admitted to emergency departments during the course of a disease. The approach and management of PC include differences with emergency medicine. Thus, there are some problems while providing PC in the ED. With this article, the definition, main features, benefits, and problems of providing PC are presented, with the primary aim of emphasizing the importance of PC integration into the ED. Key words: Emergency department, integration, palliative care, training
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
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,...
Bongartz Maren; Schulz Christian; Just Johannes M; Schnell Martin W
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...
Nakanishi, Miharu; Nakashima, Taeko; Shindo, Yumi; Miyamoto, Yuki; Gove, Dianne; Radbruch, Lukas; van der Steen, Jenny T
Dementia involves a progressive decline in many functional areas. Policy and practice guidelines should cover the entire course of the disease from early detection to the end-of-life. The present study aimed to evaluate the contents of national dementia strategies with a focus on palliative care content. We employed qualitative content analyses. Sixteen national dementia strategies from 14 countries were reviewed. Using open coding, the contents were compared to the domains and recommendations of the palliative care in dementia white paper of the European Association for Palliative Care (EAPC). Although palliative care was not explicitly referred to in eight of the 14 countries and only to a limited extent in three countries, a number of domains from the EAPC white paper were well represented, including "person-centered care, communication, and shared decision making"; "continuity of care"; and "family care and involvement." Three countries that referred to palliative care did so explicitly, with two domains being well represented: "education of the health care team"; and "societal and ethical issues." The strategies all lacked reference to the domain of "prognostication and timely recognition of dying" and to spiritual caregiving. National dementia strategies cover part of the recent definition of palliative care in dementia, although they do not frequently label these references as "palliative care." In view of the growing numbers of people dying with dementia, preparation for the last phase of life should be added to national strategies.
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.
Runacres, Fiona; Gregory, Heidi; Ugalde, Anna
Restorative care in palliative care is a subset of rehabilitation that aims to improve quality of life through restoration or maintenance of physical functions. Outcomes for restorative care programmes delivered by palliative care units have not adequately been assessed. The objectives are to examine the outcomes of a restorative care programme in an inpatient palliative care unit, including discharge destination, performance status changes and length of stay. Retrospective clinical audit of consecutive patients admitted to Calvary Health Care Bethlehem in Melbourne, Australia, principally for restorative care from July 2010 to December 2011. 79 admissions met inclusion criteria. Mean age was 76.5 years (SD=11.14) and 43 (54%) were men. 75 (95%) patients had a malignant diagnosis; of these, the majority had lung cancer (24%). 16 patients (20%) were discharged home, 51 (65%) died and 12 (15%) were transferred. Of the patients discharged home, only 6 (38% of those discharged home) improved their performance status. Those discharged home had a significantly shorter length of stay (17 days compared to 39 days; prestorative care died during admission, with only a minority discharged home. Patients discharged most commonly experienced maintenance and not improvement in performance status. A successful discharge home following restorative care was associated with a shorter length of stay. Implications and recommendations for successful restorative care will be discussed. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Fuly, Patrícia Dos Santos Claro; Pires, Livia Márcia Vidal; Souza, Claudia Quinto Santos de; Oliveira, Beatriz Guitton Renaud Baptista de; Padilha, Katia Grillo
To verify the nursing workload required by cancer patients undergoing palliative care and possible associations between the demographic and clinical characteristics of the patients and the nursing workload. This is a quantitative, cross-sectional, prospective study developed in the Connective Bone Tissue (TOC) clinics of Unit II of the Brazilian National Cancer Institute José Alencar Gomes da Silva with patients undergoing palliative care. Analysis of 197 measures of the Nursing Activities Score (NAS) revealed a mean score of 43.09% and an association between the performance status of patients undergoing palliative care and the mean NAS scores. The results of the study point to the need to resize the team of the unit. The NAS has proven to be a useful tool in oncologic clinical units for patients undergoing palliative care. Verificar a carga de trabalho de enfermagem requerida por pacientes com câncer sob cuidados paliativos e possíveis associações entre as características demográficas e clínicas dos pacientes e a carga de trabalho de enfermagem. Trata-se de um estudo de abordagem quantitativa, transversal, prospectivo, desenvolvido na clínica de Tecido Ósseo Conectivo (TOC) da Unidade II do Instituto Nacional de Câncer José Alencar Gomes da Silva, com pacientes em cuidados paliativos. A análise de 197 medidas do Nursing Activities Score (NAS) revelou um escore médio de 43,09% e uma associação entre a performance status de pacientes em cuidados paliativos com os valores médios do NAS. Os resultados do estudo apontam para a necessidade de redimensionamento da equipe da Unidade. O NAS mostrou-se um instrumento passível de utilização em unidades clínicas oncológicas, com pacientes em cuidados paliativos.
Gilmer, Mary Jo; Baudino, Marissa N; Tielsch Goddard, Anna; Vickers, Donna C; Akard, Terrah Foster
Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population. Copyright © 2016 Elsevier Inc. All rights reserved.
Chang, Richard Shek-Kwan; Poon, Wai Shuen
In neurology, many diseases are still incurable and have a fatal outcome. Palliative care (PC) definitely has a role in neurology. We discuss the screening criteria for PC referral, known as 'triggers' in different neurological diseases. Different clinical settings including in-patient and out-patient are covered. We hope this review can remind clinicians to involve PC in the appropriate patient group. Further clinical studies are expected to validate the triggers and trajectories of various neurological diseases.
Naveen S Salins
Full Text Available Intrathecal analgesia is an interventional form of pain relief with definite advantages and multiple complications. Administration of intrathecal analgesia needs a good resource setting and expertise. Early complications of intrathecal analgesia can be very distressing and managing these complications will need a high degree of knowledge, technical expertise and level of experience. Pain control alone cannot be the marker of quality in palliative care. A holistic approach may need to be employed that is more person and family oriented.
Kennedy Sheldon, Lisa; Dahlin, Constance; Maingi, Shail; Sanchez, Jose
Since 2011, oncology nurses and physicians in the United States have been volunteering in Honduras with the International Cancer Corps (ICC), organized by the American Society of Clinical Oncology (ASCO), in partnership with Health Volunteers Overseas (HVO). In this article, the authors will summarize the work of the ASCO/HVO ICC teams that developed educational programs with local partners to improve cancer and palliative care in Honduras.
Bruera, Eduardo; Willey, Jie; Cohen, Marlene; Palmer, J Lynn
Patients with advanced cancer receiving palliative care often experience severe physical and psychosocial symptoms. However, there are limited resources for psychological and emotional support. Expressive writing has shown decreased anxiety level in young and healthy people suffering from a number of stressors. The purpose of this study was to determine the feasibility of expressive writing in patients receiving palliative care and the most suitable outcomes of expressive writing in this patient population. In this pilot study, patients were randomly assigned to either the expressive writing group (EW) or the neutral writing group (NW). Anxiety level before and after the writing session was compared between the two groups. Writing materials were content analyzed using standard qualitative research methods. A total of 24 patients (12 in EW and 12 in NW) were enrolled in the study between October 2006 and January 2007. Although the majority of patients (83%-100%) were able to complete all baseline assessments, poor adherence was observed during the follow-ups. Only 8% of patients completed the 2-week study. There was no significant difference in the State-Trait Anxiety Inventory (STAI) State-Anxiety scores at baseline, before and after each writing session between the EW and NW groups. Our rapid accrual suggests that palliative care patients are interested in participating in studies such as expressive writing. The high level of adherence to the baseline assessments indicates that these assessments were not particularly difficult for our patients to complete. Future studies may need to include patients with better performance status, better patient education, means of emotional expression (i.e., audio recording, telephone interview) and improved adherence. We conclude that clinical trials of expressive writing in the palliative care setting are not feasible unless they undergo major modification in methods compared to those previous reported in other patient
Depending on anatomic location, the unchecked growth of primary or metastatic malignancies can cause a number of distressing symptoms such as hemorrhage, bone pain, visceral pain, seizure, paralysis and asphyxia. The role of radiation therapy for the relief of these symptoms is well developed. Despite the fact that perhaps half of all radiation treatments are given with palliative intent, this aspect of the field receives little discussion in major textbooks of radiation therapy. This chapter deals with the more common problems presenting for palliative management, such as bone, brain and liver metastases. The role of radiation therapy in the management of metastatic non-squamous cancer of unknown origin is also discussed here
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.
Pfister, David; Markett, Sebastian; Müller, Monika; Müller, Sigrun; Grützner, Felix; Rolke, Roman; Kern, Martina; Schmidt-Wolf, Gabriele; Radbruch, Lukas
In Germany, more and more terminally ill patients spend their last days of life in nursing homes, and this presents a challenge for these institutions. Even though palliative care is a growing domain in health care, no quantitative in-depth evaluations of the status quo in nursing homes has been conducted so far in Germany, partly because of lacking measuring tools. This study used a new questionnaire to assess German health care professionals' theoretical knowledge of palliative care and their perceived self-efficacy. Both variables have been proven to be indicators for the quality of the implementation of palliative care in nursing homes. We used the Bonn Palliative Care Knowledge Test (Bonner Palliativwissenstest, BPW) questionnaire to measure knowledge of palliative care in the domains of medicine, care, and psychosocial care and to measure self-efficacy relating to palliative care. Care workers (N=130) in five nursing homes in the region of Aachen in western Germany answered the questionnaires. The results show low knowledge (on average 52.8% correct answers) and self-efficacy relating to palliative care, although work with dying people is their daily challenge. While general knowledge correlated with work experience, a negative correlation of specific self-efficacy with age and working experience was observed. Lower self-efficacy of care workers experienced in palliative care probably implies that the difficulty of palliative care skills is underestimated by inexperienced care workers. Palliative care training is urgently needed to improve knowledge and self-efficacy. Guidance to assist care professionals involved in palliative care in nursing homes needs to be developed and provided.
Wiskar, Katie J; Celi, Leo Anthony; McDermid, Robert C; Walley, Keith R; Russell, James A; Boyd, John H; Rush, Barret
Palliative care is recommended for advanced heart failure (HF) by several major societies, though prior studies indicate that it is underutilized. To investigate patterns of palliative care referral for patients admitted with HF exacerbations, as well as to examine patient and hospital factors associated with different rates of palliative care referral. Retrospective nationwide cohort analysis utilizing the National Inpatient Sample from 2006 to 2012. Patients referred to palliative care were compared to those who were not. Patients ≥18 years of age with a primary diagnosis of HF requiring mechanical ventilation (MV) were included. A cohort of non-HF patients with metastatic cancer was created for temporal comparison. Between 2006 and 2012, 74 824 patients underwent MV for HF. A referral to palliative care was made in 2903 (3.9%) patients. The rate of referral for palliative care in HF increased from 0.8% in 2006 to 6.4% in 2012 ( P care referral in patients with cancer increased from 2.9% in 2006 to 11.9% in 2012 ( P care ( P care. The use of palliative care for patients with advanced HF increased during the study period; however, palliative care remains underutilized in this setting. Patient factors such as race and SES affect access to palliative care.
Wilson, Olivia; Avalos, Gloria; Dowling, Maura
This study examines the palliative care knowledge and attitudes towards caring for the dying patient of nurses working in care of older people settings in one rural region in Ireland. A cross-sectional survey design was used combining two questionnaires: the palliative care quiz for nurses (PCQN) and the thanatophobia scale (TS). A total of 61 nurses completed the questionnaire. There was a significant correlation found between level of knowledge and attitudes towards palliative care (p=0.007), highlighting that as participants' level of palliative care knowledge increased, attitudes become more positive. While palliative care training did not impact on the mean overall scores, there was a significant difference in the PCQN scores of those who had completed the European Certificate in Essential Palliative Care (ECEPC) compared with those who had attended information sessions within their unit. Furthermore, increasing years as a registered nurse improved palliative care knowledge and attitudes towards caring for the dying. Nurses who completed the ECEPC had better knowledge of palliative care when compared with nurses who had not undertaken the programme. This article also considers areas of focus for palliative care training.
Centeno, Carlos; Rodríguez-Núñez, Alfredo
The aim of this 2-year systematic review is to understand how learner assessment and curriculum evaluation of education in palliative care is being undertaken and to examine whether current undergraduate education influences the clinical patient's care. Almost half of the 30 studies reviewed used a qualitative approach to evaluate learning experiences. Only three of them were controlled studies and a further one was a cohort study.When students openly express themselves, they agree that there is 'something' deep as regards the core or the essence of medical practice or nursing. They feel that they become better professionals and better prepared for the patients, not only in terms of end of life care, but also as regards care, irrespective of the phase of the disease.The inclusion of palliative care in undergraduate education is a way of providing knowledge, skill, and competences about palliative care (especially communication) and also improving attitudes toward caring in advanced disease and at the end of life. Different methods of experiential learning, even brief experiences, which bring students into close contact with palliative care clinical cases or patients, are providing better results. From research studies, there is only indirect evidence that palliative care training at university leads to better clinical care of patients. In the future, long-term cohort or controlled studies might answer that question.
O'Kelly, Julian; Koffman, Jonathan
Music therapy aims to provide holistic support to individuals through the sensitive use of music by trained clinicians. A recent growth in music therapy posts in UK palliative care units has occurred despite a paucity of rigorous research. To explore the role of music therapy within multidisciplinary palliative care teams, and guide the future development of the discipline. In-depth qualitative interviews with 20 multidisciplinary colleagues of music therapists, based in five UK hospices. Analysis of interview material revealed a number of themes relevant to the study aims. Music therapy was valued by most interviewees; however there exists some lack of understanding of the role of the music therapist, particularly amongst nurses. Emotional, physical, social, environmental, creative and spiritual benefits of music therapy were described, with some benefits perceived as synergistic, arising from collaborations with other disciplines. Interviewees found experiencing or witnessing music therapy is effective in developing an understanding of the discipline. Music therapy is an appropriate therapeutic intervention for meeting the holistic needs of palliative care service users. More understanding and integration of music therapy could be encouraged with collaborative work, educational workshops, and the utilization of environmentally focused techniques. The study merits further research to explore and develop these findings.
Mathisen, Bernice; Yates, Patsy; Crofts, Penny
This paper reports on the experience of undergraduate speech-language pathology students at one university chosen for the implementation stage of the Palliative Care Curriculum for Undergraduates (PCC4U) Project. Funded by a government department for health and ageing through a national palliative care programme, the project was managed by a team of researchers from the discipline of nursing. The PCC4U project championed the inclusion of palliative care education as an integral part of medical, nursing, and allied healthcare undergraduate training. Of the pilot sites chosen for the PCC4U project, only one site, reported here, included both speech-language pathology and social work disciplines, providing an important opportunity for interdisciplinary collaboration on novel curriculum development in an area of mutual interest. This synergy served as an excellent foundation for ongoing opportunities for interdisciplinary teaching and learning in the university. Speech-language pathology students reported that the project was an invaluable addition to their education and preparation for clinical practice. © 2010 Royal College of Speech & Language Therapists.
da Silva, Marcelle Miranda; Moreira, Marleá Chagas; Leite, Joséte Luzia; Erdmann, Alacoque Lorenzini
to understand the meaning baccalaureate nurses and nursing technicians attribute to night work in the context of clinical palliative oncology nursing care services, as well as how nursing works to attend to clients and caregivers' needs in this period. in this exploratory and qualitative study, grounded theory was used. Seven nurses and four nursing technicians were interviewed, who composed two sample groups. Nine categories were produced and, in their comparative content analysis, a knowledge emphasis was evidenced with implications for nighttime nursing work. In this study, these aspects were discussed in two of the categories, which are: to describe care practice in order to understand nursing care management and to point out the difficulties in care practice and nursing care management. The results evidence the complexity in the nighttime care context, considering the clients' clinical conditions and clients and caregivers' psychological demands, mainly because of the threat of death. The team attempts to respond to these needs through communication, but reveals a lack of assistential services and an overload. Interdisciplinarity is a palliative care premise, favoring holistic care delivery, and cannot be neglected at, which requires attention and investment to develop better practices.
Garralda, E.; Hasselaar, J.G.; Carrasco, J.M.; Beek, K.; Siouta, N.; Csikos, A.; Menten, J.; Centeno, C.
BACKGROUND: Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study
Balkin, Emily M; Thompson, Daria; Colson, K Ellicott; Lam, Catherine G; Matthay, Katherine K
Studies have shown that children with cancer globally lack access to palliative care. Little is known regarding physicians' perceptions of palliative care, treatment access, and self-reported competence in providing palliative care. Members of the Global Neuroblastoma Network (online tumor board) were surveyed. Eighty-three respondents met inclusion criteria; 53 (64%) completed the survey. Most respondents trained in high-income countries (HIC) but practice in low- and middle-income countries (LMIC), and care for more than five patients with neuroblastoma annually. WHO Essential Medicines in palliative care varied in availability, with incomplete access across LMIC centers. Nonpharmacologic therapies were inconsistently available. Contrary to international definitions, 17% of respondents inappropriately considered palliative care as that initiated only after curative therapy is stopped. Mean physician competence composite score (Likert scale 1-5, 5 = very competent) in providing symptomatic relief and palliative care across phases of care was 2.93 (95% CI 2.71-3.22). Physicians reported significantly greater competence in symptom management during cure-directed therapy than during end-of-life (P = 0.02) or when patients are actively dying (P = 0.007). Practicing in HIC, prior palliative care training, having access to radiotherapy, and not having to turn patients away due to bed shortages were significantly predictive of perceived competence in providing palliative care at end of life. An international sample identified gaps in treatment and palliative care service availability, in understanding the definition of palliative care, and in self-reported competence in providing palliative care. Increased perceived competence was associated with training, which supports the need for increased palliative care education and advocacy, especially in LMIC. © 2016 Wiley Periodicals, Inc.
Buckley de Meritens, Alexandre; Margolis, Benjamin; Blinderman, Craig; Prigerson, Holly G; Maciejewski, Paul K; Shen, Megan J; Hou, June Y; Burke, William M; Wright, Jason D; Tergas, Ana I
We sought to describe practice patterns, attitudes, and barriers to the integration of palliative care services by gynecologic oncologists. Members of the Society of Gynecologic Oncology were electronically surveyed regarding their practice of incorporating palliative care services and to identify barriers for consultation. Descriptive statistics were used, and two-sample z-tests of proportions were performed to compare responses to related questions. Of the 145 respondents, 71% were attending physicians and 58% worked at an academic medical center. The vast majority (92%) had palliative care services available for consultation at their hospital; 48% thought that palliative care services were appropriately used, 51% thought they were underused, and 1% thought they were overused. Thirty percent of respondents thought that palliative care services should be incorporated at first recurrence, whereas 42% thought palliative care should be incorporated when prognosis for life expectancy is ≤ 6 months. Most participants (75%) responded that palliative care consultation is reasonable for symptom control at any stage of disease. Respondents were most likely to consult palliative care services for pain control (53%) and other symptoms (63%). Eighty-three percent of respondents thought that communicating prognosis is the primary team's responsibility, whereas the responsibilities for pain and symptom control, resuscitation status, and goals of care discussions were split between the primary team only and both teams. The main barrier for consulting palliative care services was the concern that patients and families would feel abandoned by the primary oncologist (73%). Ninety-seven percent of respondents answered that palliative care services are useful to improve patient care. The majority of gynecologic oncologists perceived palliative care as a useful collaboration that is underused. Fear of perceived abandonment by the patient and family members was identified as a
Stilos, Kalli; Daines, Patricia; Moore, Jennifer
Interprofessional education in health care and in palliative care has been the focus of increasing attention in recent years. For health professionals to provide and deliver high-quality palliative care, collaboration and teamwork is required. Palliative care is the ideal service to introduce interprofessional teamwork to medical learners early on in their training. During a 1-month palliative care rotation in Ontario, Canada, medical learners completed a questionnaire seeking their feedback on the interprofessional team model. This article will highlight the results of the questionnaire, how the team promotes a culture of interprofessional collaborative practice, and the supportive structures that foster collaboration among professionals.
LoGiudice, Jenna A; O'Shea, Eileen
Midwifery students with perinatal palliative care education develop a skillset to provide holistic midwifery care to women and families who are experiencing stillbirth or life-limiting fetal diagnoses. This paper presents a model of perinatal palliative care in a United States midwifery education program. By utilizing evidence based practices and national programs, perinatal palliative care can be threaded through midwifery curricula to achieve international standards of practice and competencies. Most importantly, enhancing perinatal palliative care education will better prepare future midwives for when a birth outcome is not what was expected at the outset of a pregnancy. Copyright © 2018 Elsevier Ltd. All rights reserved.
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.
Ciałkowska-Rysz, Aleksandra D; Pokropska, Wieslawa; Łuczak, Jacek; Kaptacz, Anna; Stachowiak, Andrzej; Hurich, Krystyna; Koszela, Monika
The main task of palliative care units is to provide a dignified life for people with advanced progressive chronic disease through appropriate symptom management, communication between medical specialists and the patient and his family, as well as the coordination of care. Many palliative care units struggle with low incomes from the National Health Fund (NHF), which causes serious economic problems. The aim of the study was to estimate of direct and administrative costs of care and the actual cost per patient per day in selected palliative care units and comparison of the results to the valuation of the NHF. The study of the costs of hospitalization of 175 patients was conducted prospectively in five palliative care units (PCUs). The costs directly associated with care were recorded on the specially prepared forms in each unit and also personnel and administrative costs provided by the accounting departments. The total costs of analyzed units amounted to 209 002 EUR (898 712 PLN), while the payment for palliative care services from the NHF amounted to 126 010 EUR (541 844 PLN), which accounted for only 60% of the costs incurred by the units. The average cost per person per day of hospitalization, calculated according to the actual duration of hospitalization in the unit, was 83 EUR (357 PLN), and the average payment from the NHF was 52.8 EUR (227 PLN). Underpayment per person per day was approximately 29.2 EUR (125 PLN). The study showed a significant difference between the actual cost of palliative care units and the level of refund from the NHF. Based on the analysis of costs, the application has been submitted to the NHF to change the reimbursement amount of palliative care services in 2013.
Pokropska, Wieslawa; Łuczak, Jacek; Kaptacz, Anna; Stachowiak, Andrzej; Hurich, Krystyna; Koszela, Monika
Introduction The main task of palliative care units is to provide a dignified life for people with advanced progressive chronic disease through appropriate symptom management, communication between medical specialists and the patient and his family, as well as the coordination of care. Many palliative care units struggle with low incomes from the National Health Fund (NHF), which causes serious economic problems. The aim of the study was to estimate of direct and administrative costs of care and the actual cost per patient per day in selected palliative care units and comparison of the results to the valuation of the NHF. Material and methods The study of the costs of hospitalization of 175 patients was conducted prospectively in five palliative care units (PCUs). The costs directly associated with care were recorded on the specially prepared forms in each unit and also personnel and administrative costs provided by the accounting departments. Results The total costs of analyzed units amounted to 209 002 EUR (898 712 PLN), while the payment for palliative care services from the NHF amounted to 126 010 EUR (541 844 PLN), which accounted for only 60% of the costs incurred by the units. The average cost per person per day of hospitalization, calculated according to the actual duration of hospitalization in the unit, was 83 EUR (357 PLN), and the average payment from the NHF was 52.8 EUR (227 PLN). Underpayment per person per day was approximately 29.2 EUR (125 PLN). Conclusions The study showed a significant difference between the actual cost of palliative care units and the level of refund from the NHF. Based on the analysis of costs, the application has been submitted to the NHF to change the reimbursement amount of palliative care services in 2013. PMID:27186194
Büche, Daniel J
Assessment in palliative care is very important. The assessment is a structured and goal oriented procedure. Both is important - structure and goal - because of the patient's vulnerability and in respect to his life-threatening illness. Assessment instruments play a limited role in the process of assessment because many values in palliative care are individual, subjective and their comparison to each other and their measure are limited. It isn't scientific to measure values which aren't measureable. Values become less measureable when complexity grows. Complexity can't be simplified because simplification destroys complexity. It makes sense to ask oneself which outcome an assessment instrument will measure before we use it.
Zahradnik, Erin K; Grossman, Hillel
The goal of this narrative review was to identify and summarize the ways in which palliative care could benefit patients who have advanced dementia. This case-based discussion article examines current literature on palliative care for dementia. Dementia is an incurable, progressive disease that affects millions of subjects. The prevalence has grown in the last decade and is projected to continue on this trajectory. In the later stages of dementia, subjects require increasing levels of care due to severe cognitive and functional impairment. Although the field of palliative medicine focuses on improving the quality of life of patients with life-limiting illnesses, many patients with advanced dementia do not receive palliative care services. Palliative care has been shown to improve patient and caregiver satisfaction, quality of life, and symptom burden at the end of life. Patients with advanced dementia would benefit from increased access to palliative care. Copyright © 2014 Elsevier HS Journals, Inc. All rights reserved.
Lloyd-Williams, Mari; Abba, Katharine; Crowther, Jacqueline
People with preexisting mental illness are known to have difficulty accessing healthcare services including palliative care and people with dementia have similar issues accessing palliative care. The review addressed the time period from January 2013 to March 2014. There were few articles addressing issues for palliative and supportive care for patients with preexisting mental health issues. The main factor that would improve care is interdisciplinary working between mental healthcare teams and palliative care teams. In contrast, there were many published articles on the palliative and supportive care needs for people with dementia. These articles included consensus statements, models of care; studies of why models of care, for example Advanced Care Planning were not being implemented; and carer reports of care in the last year of life. Urgent research is required as to how support for people with preexisting mental illness who require palliative care can be improved--excellent liaison between mental health and palliative care teams is essential. There is much research on palliative care needs for people with dementia but an apparent lack of innovative approaches to care including care of people within their family home.