Concept Of Palliative Care Research Articles

HOW WELL DO THE GENERAL PUBLIC UNDERSTAND PALLIATIVE CARE? A MIXED METHODS STUDY

BackgroundInternational research suggests that the general public appear to be confused about what palliative care is and who provides it.1 2 An understanding of public views is needed in order...

Quality Improvement in Neurology: Dementia Management Quality Measures

Professional and advocacy organizations have long urged that dementia should be recognized and properly diagnosed. With the passage of the National Alzheimer's Project Act in 2011, an Advisory Council for Alzheimer's Research, Care, and Services was convened to advise the Department of Health and Human Services. In May 2012, the Council produced the first National Plan to address Alzheimer's disease, and prominent in its recommendations is a call for quality measures suitable for evaluating and tracking dementia care in clinical settings. Although other efforts have been made to set dementia care quality standards, such as those pioneered by RAND in its series Assessing Care of Vulnerable Elders (ACOVE), practitioners, healthcare systems, and insurers have not widely embraced implementation. This executive summary (full manuscript available at www.neurology.org) reports on a new measurement set for dementia management developed by an interdisciplinary Dementia Measures Work Group (DWG) representing the major national organizations and advocacy organizations concerned with the care of individuals with dementia. The American Academy of Neurology (AAN), the American Geriatrics Society, the American Medical Directors Association, the American Psychiatric Association, and the American Medical Association-convened Physician Consortium for Performance Improvement led this effort. The ACOVE measures and the measurement set described here apply to individuals whose dementia has already been identified and properly diagnosed. Although similar in concept to ACOVE, the DWG measurement set differs in several important ways; it includes all stages of dementia in a single measure set, calls for the use of functional staging in planning care, prompts the use of validated instruments in patient and caregiver assessment and intervention, highlights the relevance of using palliative care concepts to guide care before the advanced stages of illness, and provides evidence-based support for its recommendations and guidance on the selection of instruments useful in tracking patient-centered outcomes. It also specifies annual reassessment and updating of interventions and care plans for dementia-related problems that affect families and other caregivers as well as individuals with dementia. Here, a brief synopsis of why major reforms in healthcare design and delivery are needed to achieve substantive improvements in the quality of care is first provided, and then the final measures approved for publication, dissemination, and implementation are listed.

Palliative Wound Care

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

Exploring the perspectives of nurses, physicians, and healthcare administrators in Saudi Arabian hospitals on palliative care and palliative care nursing

Palliative care is an area in healthcare that is focused on alleviating and/or preventing the suffering experienced by patients across various conditions. In recent years, palliative care has grown tremendously as an integral part of healthcare institutions worldwide. However, not all countries have well-established palliative care services, or recognise the importance of palliative care. It is important for healthcare professionals to recognise the value of palliative care, and those who work in order to be able to provide such care to patients. However, there may be professional and cultural barriers that prevent practitioners in specific contexts to be able to do so. Specifically, this paper considered the context of the Kingdom of Saudi Arabia (KSA), which is known to be culturally different from the west where the concept of palliative care originated and where the recent progress in palliative care is most evident. In this paper, reviewing of articles regarding cancer care in Saudi Arabia, cancer pain in Saudi Arabia, overview of palliative care in Saudi Arabia and issues with palliative care in Saudi Arabia are analysed and discussed to proceed with the intended research study to solve the research questions.

Nurses’ perception on palliative care and management of pain at the ICU

Taking care of a human being in the death process is a challenge for nurses working at the Intensive Care Unit (ICU). Thisstudy aimed to identify and analyze the nurses’ perception on palliative care and management of pain in an Intensive CareUnit and characterize the sample. This quanti-qualitative study was developed at an Intensive Care Unit of Campinas, inthe state of Sao Paulo. Eight nurses participated in the study. Data were collected from June to August 2011 through semi--structured interviews recorded individually. Quantitative data were analyzed through descriptive statistics and qualitativedata were analyzed according to the content analysis methodology. The nurses working in the ICU form a heterogeneousteam having different time experience as a nurse, different working time in the ICU and in the institution. By analyzingthe speeches, five categories were evidenced: palliative care concept, nursing care in palliative care at the ICU, measuresto evaluate and control pain, lack of consensus for palliative care and pain control and family integration at the ICU. Thedifficulty of the nurses in relation to palliative care and pain management highlights the importance of approaching thetheme since undergraduate level and of the education activities aimed at a permanent education of the professionals aboutthe theme.

Quality Improvement in Neurology: Dementia Management Quality Measures (Executive Summary)

This article represents the efforts of an interdisciplinary work group, the Dementia Measures Work Group (DWG), composed of representatives of diverse national organizations who convened specifically to define optimal standards of dementia care for individual practitioners as well as multidisciplinary teams. The DWG measurement set includes all stages of dementia in a single measure set, calls for the use of functional staging in planning care, prompts the use of validated instruments in patient and caregiver assessment and intervention, highlights the relevance of using palliative care concepts to guide care prior to the advanced stages of illness, and provides evidence-based support for its recommendations and guidance on the selection of instruments for tracking patient-centered outcomes. In addition, it specifies annual reassessment and updating of interventions and care plans for dementia-related problems that affect families and other caregivers as well as patients.

014 Challenging the perception of death and dying through documentary film making in a hospice

BackgroundHealth promoting palliative care is a relatively new concept in palliative care that aims to increase public awareness and open discussion in relation to death and dying. A year long...

Public awareness and attitudes toward palliative care in Northern Ireland

BackgroundThe World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland.MethodsA community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate.ResultsA total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested.ConclusionsPublic awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care.

Recent Advances in Palliative Cancer Care at a Regional Hospital in Japan

More than 30 years have passed since the introduction of the concept of palliative care in cancer care in Japan. However, the majority of the estimated three million cancer patients in Japan do not receive palliative care. Higashi Sapporo Hospital was established in 1983 as a hospital specialized in cancer care. The palliative care unit of our hospital currently consists of 58 beds. Our hospital is one of the largest hospitals in Japan in terms of the number of palliative care beds. On admission to our hospital, all patients are evaluated for palliative care by a multi-disciplinary team and some patients who undergo anticancer therapy receive palliative care when necessary. There are about 65 patients on average (28.3%) who are receiving only palliative care. In 2011, 793 patients died of cancer while admitted at our hospital. This number of cancer deaths accounted for 15% of the 5,324 cancer deaths in Sapporo City in the same year. Our hospital has played an active role according to the philosophy that "palliative cancer care is part of cancer medical care". We here report the current status of the contribution of our hospital to overcoming problems in palliative care and cancer care in Japan.

O trabalho de cuidar de pacientes terminais com câncer

This is a study conducted in the palliative care unit of the INCA National Cancer Institute, in an attempt to understand the nature of the work and its effects on the health of the professionals. A qualitative approach is adopted, based on participant observation and semi-structured interviews with professionals from the hospital. Most of the professionals are female and were unaware of the concept of palliative care when they started their careers in the Unit. Teamwork is highly valued by the professionals who involve the families in the care actions and motivate the participation of patients and relatives in decision-making. However, these workers experience high emotional stress due to their involvement in the suffering of patients and families. They are also exposed to considerable physical stress caused by the intense demand of the daily routine and the dependence of the majority of patients. The study revealed that there are many professionals on leave of absence due to musculoskeletal problems and psychiatric disorders. There is a pressing need for health support programs for these professionals and awareness of daily care measures for their own health. However, their suggestions for improvement of working and health conditions are merely passed on to be implemented by the institutions themselves.

Exploring the experience of dignified palliative care in patients with advanced cancer and families: A feasibility study in Singapore

Dignity is an important concept in palliative care. Yet, the concept is ambiguous and there does not seem to be agreement on how care can be delivered that preserves dignity at the end of life. The aim of the study was to conduct a feasibility study to explore the experience of dignity in palliative care in Singapore. We conducted qualitative interviews with four patients with advanced cancer and their primary family caregiver from a local largest home hospice service. The preliminary findings showed that the experience of dignity in Singapore context consists of three factors, which reflected 12 themes. These are (1) social factor, which comprised of family, friends, relatives, and employers; (2) organizational factor, which comprised of the healthcare system, voluntary welfare organization, and private sector, and (3) spiritual factor, which was associated with existential values, cultural and religious belief systems of the patients, and their families. The preliminary findings suggest similarity to the Western findings: dignity can be preserved by holistic care that focuses on psychosocial, physical, and spiritual aspects. In addition, dignified patient care should encompass the knowledge and sensitivity to the multi-cultural and multi-ethnic practices and health beliefs of the patients and their families. In conclusion, the preliminary findings suggest that using systems perspective, it is feasible to conduct a study to develop an empirical model on dignified palliative care in the Singapore context.

Veterinary palliative and hospice care - making the transition from ‘cure’ to ‘care’

The term ‘palliative care’ has become almost synonymous with human medicine, most notably cancer care, however veterinary practices have a pivotal role to play in palliative and end-of-life care for companion animals. Until recently, very little information was available on how to apply the principles of palliative and hospice care into the veterinary profession despite the fact that patients with chronic and life-limiting disease are seen on a daily basis. Consider the cat with chronic renal failure or the dog with congestive heart failure or osteoarthritis. Dietary and therapeutic management can make a real difference to such patients' quality of life and also their life expectancy, and as such these patients are often treated ‘palliatively’ for months to years without any expectation of a real ‘cure’. Many veterinary personnel do not recognise such treatment as palliative care however it is exactly this. This article aims to introduce the reader to the concepts of veterinary palliative and hospice care and ask them to consciously consider making the difficult transition from the ‘cure’ to ‘care’ approach.

Symptom clusters and demographic characteristics in advanced cancer.

9638 Background: Little is known about demographic variations in cancer symptom clusters (SC). Our objective was to determine whether SC are associated with age, gender, race, performance status (PS), or primary cancer site. Methods: Symptoms from 1000 advanced cancer patients referred to a palliative medicine program were recorded prospectively. Among 922 patients with complete symptom data, hierarchical cluster analysis identified 7 SC. A SC was considered present if the patient had ≥50% of the symptoms in the cluster. Comparisons were made between patients with and without each cluster using the chi-square test (age <65 vs. ≥65 years; gender female (F) vs. male (M); race Caucasian (C) vs. African American (AA); 10 primary site groups (PSG), or Wilcoxon rank sum test (ECOG PS 0-4). A p value <0.05 indicated statistical significance. Results: 83% of patients were C, 52% ≥65 years, 56% M, and 55% had ECOG PS 3-4 Most common PSG were lung (25%), genitourinary (18%), and gastrointestinal (GI) (11%). Fatigue/anorexia-cachexia cluster was associated with race (58% AA vs. 68% C, p=0.032) and PSG (range 47% melanoma to 83% pancreas, p=0.012); Neuropsychological cluster was associated with older age (29% ≥65 vs. 39% <65, p<0.001) and race (22% AA vs. 36% C, p=0.001). Upper GI cluster was associated with female gender (16% M vs. 22% F, p=0.035) and PSG (range 8% Head & Neck to 32% pancreas, p=0.035). Nausea/Vomiting cluster was associated with younger age (35% ≥65 vs. 43% <65, p=0.010) and female gender (33% M vs. 47% F, p<0.001). Aerodigestive cluster was associated with male gender (36% F vs. 44% M, p=0.010) and PSG (range 24% pancreas to 58% Head & Neck, p<0.001). Debility cluster was associated with race (33% AA vs. 44% C, p=0.016) and poor PS (range 17% PS0 to 54% PS4, p<0.001). Pain cluster was associated with younger age (88% ≥65 vs. 92% <65, p=0.028). Conclusions: We identified 7 SC whose prevalence were influenced by age, gender, race, PS, or primary cancer site. This supports the clinical relevance of the cluster concept in palliative and supportive care. Demographic characteristics may warrant different clinical approaches to patient care. Identification of these differences may help develop more effective cancer treatment and management strategies.

State of the Science on Perinatal Palliative Care

To report the state of the science since 1995 on the concept of palliative care for parents who opt to continue a pregnancy after receiving a life-limiting fetal diagnosis. PubMed, Ovid, PsycInfo, CINAHL, and Medline were searched from 1995 to July 2012 using the terms perinatal palliative care and perinatal hospice. Inclusion criteria included empirical studies written in English that focused on experiences of parents who opted to continue a pregnancy in which the fetus had a life-limiting condition or on perinatal palliative care. Twenty studies met inclusion criteria. Results from empirical studies contributing to the knowledge base of perinatal palliative care are presented. Women are confronted with powerful emotions, challenging decisions, and considerable uncertainty following the news of a life-limiting fetal anomaly. Women choose to continue their pregnancies for a variety of reasons and when doing so embark on a search for meaning. The science suggests that perinatal palliative care is welcomed by parents and is a medically safe and viable option. Women voiced positive feedback about their decisions to continue their pregnancies, and parents cited personal growth in the aftermath. Perinatal palliative care programs provide services that incorporate early and integrative care beginning in the antenatal period. A multidisciplinary coordinated approach provides parents with comprehensive, holistic support. More research is needed to elucidate the factors that will benefit parents who continue their pregnancies. Investigating the needs and perceptions of clinicians and their willingness to participate in this new model of care is necessary as is examining barriers that may undermine care. Nurses can lead research on these topics and implement evidence-based practice grounded on study findings.

Exploring the Perceptions and the Role of Genetic Counselors in the Emerging Field of Perinatal Palliative Care

Perinatal palliative care is a collaborative model of providing care to fetuses diagnosed with life-limiting conditions along with supportive care to parents. The study explored perceptions and current practice trends of genetic counselors related to this care. An ethics framework was used to structure the study. This cross-sectional, mixed method study was conducted to illuminate perceptions, practice barriers, familiarity with perinatal palliative care, clinician comfort, and referral comfort. The Perinatal Palliative Care Perceptions and Barriers Scale was self-administered online to 212 genetic counselors. Hierarchical multiple regression, used to test the hypothesis that perceptions, barriers to PPC, years of experience, personal comfort and prior familiarity with PPC explain variation in comfort of referral to PPC, yielded a significant overall R (2) of .51. These findings are the first data describing genetic counselors' perspectives and some of the factors contributing to referral comfort. Genetic counselors broadly endorsed the importance of palliative care concepts. They varied in their comfort with referral practices in ways that may be mitigated by increasing their familiarity with this evolving model of care.

International recommendations for outpatient palliative care and prehospital palliative emergencies – a prospective questionnaire-based investigation

BackgroundTo determine the international recommendations and current practices for the treatment and prevention of palliative emergencies. The primary goal of the study was to gather information from experts on their nationally practised concepts.MethodsOne hundred and fifty self-report surveys were distributed by email to selected leading experts (palliative and emergency medical care) in Europe, North and South America, Africa, Asia, and Australia. An expert in this context was defined as an author of an article that was ranked by three reviewers as relevant to outpatient palliative and emergency medical .ResultsThe total response rate was 61% (n = 92 experts). Survey responses were obtained from 35 different countries. The following standards in the treatment of palliative emergencies were recommended: (1) early integration of “Palliative Care Teams” (PCTs) and basic outpatient palliative care systems, (2) end-of-life discussions, (3) defined emergency medical documents, drug boxes, and “Do not attempt resuscitation” orders and (4) emergency medical training (physicians and paramedics).ConclusionsThis study detected structurally and nationally differences in outpatient palliative care regarding the treatment of palliative emergencies. Accordingly, these differences should be discussed and adapted to the respective specifications of individual single countries. A single established outpatient palliative emergency medical care concept may be the basis for an overall out-of-hospital palliative care system.

Diet and Nutrition in Cancer Survivorship and Palliative Care

The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health outcomes and perhaps even positively affect cancer recurrence and progression. In this regard, there has been a recent emphasis in the literature on nutrition and cancer as an important factor in both quality of life and in the pathophysiology of cancer. Hence, the primary purpose of this paper is to review the current data on diet and nutrition as it pertains to a wide range of cancer patients in the palliative care setting.

For a Modern Concept of Palliative Care

his article was originally published in a journal published by OMICS Publishing Group, and the attached copy is provided by OMICS Publishing Group for the author’s benefi t and for the benefi t of the author’s institution, for commercial/research/educational use including without limitation use in instruction at your institution, sending it to specifi c colleagues that you know, and providing a copy to your institution’s administrator.All other uses, reproduction and distribution, including without limitation commercial reprints, selling or licensing copies or access, or posting on open internet sites, your personal or institution’s website or repository, are requested to cite properly.

Turkish Healthcare Professionals’ Views on Palliative Care

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

In search of legitimacy – registered nurses’ experience of providing palliative care in a municipal context

The palliative care approach was originally developed for hospice care and for persons with cancer diseases, but has gradually expanded to embrace other contexts and people of all ages, with various life-threatening diseases. The palliative care concept thus also applies to older people and the context of municipal care, where Registered Nurses (RNs) hold key care provision positions. The municipal context is not, however, focused primarily on advanced nursing care, and it is important to highlight RNs' prerequisites for care provision. The study's aim was to describe RNs' experience of providing palliative care for older people in a municipal context. Data were collected through focus group discussions with 20 RNs from four different municipalities in southern Sweden and were analysed using conventional content analysis. The results showed that the nurses experienced that it was they who cushioned the effects of unclear responsibilities between different organizations, but had limited legitimacy in the municipal context and in relation to other care providers. The results also showed that nurses lacked proper support and prerequisites for providing high-quality palliative care to older dying patients. The results pinpoint the importance of increased acknowledgement of nurses' knowledge and skills and a critical view on the effects of moving towards an organization composed of different consultants, which can lead to even more unclear responsibility for nursing care provision.