Burnout among palliative care providers.

Globally, over 20.4 million people need palliative care services annually. The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer. With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise. Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services. Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups. Sometimes these challenges are believed to be due to cultural incompetence of the care provider. When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue. Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion. Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and bring about a sense of identity that may encompass a common language and religion. Ethnicity is fluid and should not be confused with nationality or migration or race. In this review, we define ethnicity in relation to the self-identification of participants in studies that will be included in the review.Culture refers to patterns of explanatory models, beliefs, values and customs. These patterns may be informed and expressed in things like diet, clothing or rituals, or in the form of language and social or political systems. Culture may be fluid because of developments in people's lives. In light of the aforementioned definitions, and recognizing the inconsistency in how these terms are sometimes used, the authors of this review define ethnocultural patients, as described in papers to be reviewed, as those who belong to an ethnic group by way of involvement, attachment, self-labelling or attitude towards the group, and who share cultural traditions, ancestry, language, nationality or country of origin.Palliative care in the context of cancer focuses on the improvement of the quality of life of patients by addressing their physical, emotional and spiritual needs, and by supporting their families. Palliative care is often associated with supportive and hospice care. Supportive care emphasizes meeting patients' needs such as physical, mental, social, psychological, emotional and material needs from the period before diagnosis, during diagnosis, treatment to the follow-up period in the cancer trajectory. Hospice care in the context of cancer aims to relieve patients' pain and suffering, and improve their quality of life. Hospice care includes palliative care services and other services such as case management, respite care and bereavement care. Hospice care focuses on patients with terminal illness (i.e. with expected survival of less than six months) and their families. Moreover, hospice care is facilitated by a multidisciplinary team of physicians, nurses, social workers, chaplains, home health aides and volunteers.Palliative care needs for cancer patients are numerous and may include needs related to activities of daily living, communication, sexuality, physical needs, psychological needs, fear, spiritual wellbeing, socioeconomic aspects and insufficiency of information. Cancer patients often report of suffering, pain and being in constant need of support. In dealing with their suffering, some patients seek internal motivation by looking at the disease as a life challenge. Other patients turn to external sources of motivation like religion, or peer and family support groups.Patients from different ethnocultural groups report similar as well as dissimilar palliative care needs and experiences. With respect to similarities, a study from the United States found that African American and Caucasian patients alike valued practical assistance from social groups. Participants from both ethnocultural groups valued friends and families that listened to their cancer-related concerns. Similarly, Turkish and Moroccan patients in a study conducted in Netherlands valued friends and family members that were there for them. Additionally, participants particularly of African American descent treasured positive attitudes from people around them and valued support from religion and faith communities. These sentiments are echoed in a palliative care study conducted in the United Kingdom. In the UK study, Caribbean Blacks and British White patients appreciated the significance of social networks and partner or spousal support in their cancer trajectory.In regards to unsupportive palliative care experiences, authors of the United States study report that African Americans and Caucasians had more similarities than differences. Firstly, both ethnocultural groups shared experiences of losing association with family and close friends after they learnt of the patients' diagnosis. These sentiments were also reported by Danish-born and immigrant patients in a study by Kristiansen and colleagues. Secondly, both African American and Caucasian patients felt responsible for the emotional wellbeing of their loved ones.When it comes to differences in palliative care needs and experiences, Grange and colleagues report that African American and Caucasian participants valued provision of housing which included daily patient care. Participants treasured the opportunity to either move or have family members move in and live with them. However, more African American than Caucasian participants had experiences of moving in with a family member. Important differences in unsupportive palliative care were also reported. Although both African Americans and Caucasians lost friends and family members following knowledge of the cancer diagnoses, more African Americans than Caucasians were likely to report losing friendship. Additionally, African Americans experienced diminished independence mainly because of overprotection from family and friends. Diminishing independence is echoed in the Dutch study involving Turkish and Moroccan patients. However, in the Dutch study, healthcare providers appeared to advocate for patients' independence which contradicted with the value placed by family members in protecting their loved one.In another American study, Latina women desired health-related information more often than their Caucasian American counterparts. The need for information by Latina women was irrespective of their socio-demographic factors, including level of education.The aforementioned similarities and differences in palliative care experiences call for further exploration of ethnocultural palliative care patients' experiences. A better understanding of their experiences will create avenues for finding better ways of providing palliative care, preventing psychological distress and improving quality of life and death.Understanding ethnocultural issues is important because the unique characteristics of ethnocultural groups often inform approaches to palliative care. Ethnocultural meanings of illness, suffering and dying define the theoretical underpinnings that patients and healthcare providers draw upon in their relations. Furthermore, Baker suggests that the provision and receipt of palliative care is more related to culture or ethnicity than to age, education, socioeconomic status or other variables. Moreover, culture affects communication, decision-making, response to symptoms, treatment choices and emotional expression at the end of life.Palliative care patients often regard recommendations from healthcare providers as very useful. Similarly, healthcare providers may find ethnocultural knowledge beneficial in the provision of palliative care. When ethnocultural knowledge is lacking, healthcare providers, especially those with minimal training on ethnocultural issues, may provide unsatisfactory palliative care. Similarly, when ethnocultural differences are overlooked or inadequately addressed, inferior care often occurs. Inferior care which may involve inequality in utilization of and access to palliative care services, pain and symptom management and location of death, is especially disturbing when adequate palliative care resources exist in some health institutions.Although qualitative and quantitative research has been conducted in this area, no systematic review compiling findings on ethnocultural patients' experiences of palliative care has been conducted or is underway as per the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews or PROSPERO. The purpose of this systematic review is to summarize findings of qualitative studies that focus on ethnocultural patients' experience of palliative care. (ABSTRACT TRUNCATED)

Public Awareness and Perceptions of Palliative and Comfort Care

Nurse Practitioners in Emergency Care

Cancer and palliative care in Africa.

In Germany, palliative care has developed rapidly since the establishment of the first palliative care unit in 1983. More improvements in patient-centered care are only possible if legal requirements as well as education of physicians, nurses, and other professionals involved in palliative care are adapted to current needs. This paper provides an overview of legal and regulatory requirements including a critical appreciation of their influence on palliative care in Germany. Only recently has medical education in palliative medicine been implemented as an integral part of medical studies at German universities. Starting in 2014, physicians applying for a license to practice medicine will have to provide a certificate of basic training in this field. The challenge in upcoming years will be the establishment and enhancement of comprehensive, standardized, and quality-controlled education at the universities. Only six universities have established chairs for palliative medicine, and it will be essential to not only establish more chairs but also to involve medical students in the development of the education. Only minimal requirements are specified for education of nurses in palliative care in the legislation. However, standardized and quality-controlled advanced training courses are available. This training is frequently requested as a prerequisite for nurses working in palliative care. Only limited education programs exist for other professional groups that are an important part of the palliative care team. In addition to the development of palliative care for inpatients with an increasing number of palliative care units, hospices, and first chairs of palliative medicine, different forms of ambulant palliative care services have been developed. Changes in the legislation have influenced the situation for home care enormously in the last 5years, also making it more complex. With the Law for the Consolidation of the Competition in Compulsory Health Insurance ("Gesetz zur Stärkung des Wettbewerbs in der gesetzlichen Krankenversicherung"), a legal claim for palliative home care has been implemented in the fifth book of the social law in 2007. The ambitious goal of full coverage with comprehensive palliative home care has still not been achieved in most locations. However, after initial negotiation difficulties between palliative care providers and health insurance funds, an increasing number of contracts have been made. As a consequence-in addition to more than 240 palliative care units in Germany-more than one hundred palliative care teams have begun work in the field of specialized palliative home care. Legal regulations for the supply of opioids and other medications for the treatment of patients at home have been adapted recently, thus, facilitating fast and comprehensive medical treatment in emergency situations. Overall, the legislation has been adapted significantly, hence, contributing to improvements for patients requiring palliative care. It remains to be seen whether additional adjustments are required in the future.

PC-FACS

The ABCs of Renal Palliative Care: Tools for Decision-Making and Symptom Management in Kidney Disease (TH312)

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative Care<i>November 13–15, 2014</i><i>Orlando, Florida</i>

ABSTRACTAimTo gain an understanding of palliative care need and provision in adult medical and surgical inpatients.DesignAn observational point prevalence study was conducted across four study sites in Western Australia.MethodsAll data were collected directly from patient medical records by Registered Nurses. Potential palliative care need was assessed using disease‐specific indicators for the 12 conditions outlined in the Gold Standards Framework Proactive Indicator Guidance.ResultsA total of 865 medical and surgical inpatients met study inclusion criteria. Across the four study sites, 38% (n = 331) of adult inpatients reviewed could have potentially benefitted from palliative care. Of the n = 331 patients assessed as having indicators for palliative care, there was evidence that 27% (n = 90) were currently receiving some form of palliative care, while 3% (n = 9) had been referred for specialist palliative care. For the majority of patients (70%, n = 232) there was no evidence of them receiving any form of palliative care or awaiting specialist palliative care.ConclusionThis study identified high levels of potential palliative care need among adult medical and surgical inpatients. The majority of the patients identified as having indicators for palliative care were not receiving any form of palliative care.Implications for the Profession and/or Patient CareThe high prevalence of palliative care need found in this study highlights that recognising and addressing palliative care is essential for high‐quality care for medical and surgical inpatients. To address the high level of need identified all nurses require basic palliative care training to provide optimal patient care.ImpactKnowledge about the level of palliative care need and provision of palliative care in public hospitals was limited. This study identified a high prevalence of potential palliative care need in medical and surgical inpatients. The majority of patients with indicators for palliative care were not receiving any form of palliative care. This research demonstrates that palliative care needs should be considered by all registered nurses and other health professionals caring for medical and surgical inpatients.Reporting MethodThe study is reported using the STROBE guidelines.Patient or Public ContributionNo patient or public contribution.

e16553 Background: In the last decades, improvements in systemic therapies and advances in supportive and palliative care made pts, usually early referred to exclusive supportive care, suitable for integrated strategies of care. This approach responds to an increasing effort to integrate palliative care in the model of comprehensive cancer care. Its feasibility relies on cooperation between oncologists and palliative care providers along the period of disease until the death of the pt. We report the experience of our Simultaneous Care Unit in the period 2008-11. Methods: We observed 159 pts (76 M, 83 F), median age 72 years (29-95), affected by advanced solid tumors or hematological malignancies. All pts received assistance by the Simultaneous Care Unit (SCU) composed by oncologists, psychologists, palliative care providers, spiritual assistants. They all received palliative and supportive care in the home setting and cancer therapies as outpatient. All pts were monthly evaluated for clinical benefit, defined as follows: ESAS score decreasing from &gt;4 to &lt;4 cut points and PS ECOG decrease from ≥2 to &lt;2. We also evaluated the rate of hospitalization as the number of pts requiring access to our Acute Palliative Care Unit (APCU) as inpatient for acute illness or uncontrolled symptoms. Costs analysis was performed on the basis of the DRG reimbursements. Results: The median length of simultaneous care was 88 days (95% C.I. 68.75-111.51). Clinical benefit rate was 63,5% (95% C.I. 55.96-71.09). Hospitalization rate was 23,27% (95% C.I. 16.63-29.91). Median length of hospitalization for each pt (until symptom improving or death, if occurred) was 22,5 days. Median cost for each pt hospitalized at our APCU was 4478 euros. Conclusions: Our experience within the SCU shows that the early integration of SC and active cancer treatments is effective. Our % hospitalization is lower than that reported by other authors in the same settings of pts (range 30-70%) with a significant saving of money. If confirmed in prospective pharmaco-economic studies, our data suggest that our model provides a high-quality assistance to frail patients and could be exportable also in other settings of chronic illness, potentially leading to a more wise way to use Health Care System resources.

Background: With the renewed emphasis on palliative care in Singapore, coupled with a dearth of studies on provision of palliative care in acute services, it is timely to explore the experiences, barriers and challenges faced by oncology nurses in the acute care setting. Aim: This study aimed to explore nurses’ experiences of providing palliative care in the acute oncology care unit. Method: An exploratory descriptive research methodology was adopted. Focus group interviews, involving a total of 24 nurses, were conducted. Interviews were audio-taped and transcribed verbatim. Data was analyzed using an inductive content analysis approach. Results: Five key themes emerged from the analysis: (1) nurses’ perceptions of palliative care; (2) multiple roles of nurses in palliative care; (3) emotional burden of providing palliative care; (4) misconceptions of palliative care; (5) challenges in providing palliative care. Conclusion: The provision of palliative care in the acute care setting remained challenging. This is partly due to the attitudes of patients, families and healthcare workers, as well as organizational factors such as lack of training. Nurses play an important role in giving and facilitating palliative care for patients in the hospitals. Future studies can explore interventions to help overcome the challenges that are impeding nurses from providing high-quality palliative care in the acute care setting.

BackgroundCommunity health workers (CHWs) are currently deployed in improving access to palliative care in a limited number of low-income or middle-income countries (LMICs). This review therefore aimed to document evidence...

Palliative therapies have an important role in increasing the quality of healthcare and in dealing with physical and psychosocial problems due to cancer. We here aimed to evaluate the managerial perspectives and opinions of the hospital managers and clinical directors about specialized palliative care centers. This study was conducted in two large-scale hospitals in which oncology care is given with medical directors (n:70). A questionnaire developed by the researchers asking about demographic characteristics and professional experience, opinions and suggestions of medical directors about providing and integrating palliative care into healthcare was used and responses were analyzed. Potential barriers in providing palliative care (PC) and integrating PC into health systems were perceived as institutional by most of the doctors (97%) and nurses (96%). Social barriers were reported by 54% of doctors and 82% of nurses. Barriers due to interest and knowledge of health professionals about PC were reported by 76% of doctors and 75% of nurses. Among encouragement ideas to provide PC were dealing with staff educational needs (72%), improved working conditions (77%) and establishing a special PC unit (49)%. An independent PC unit was suggested by 27.7% of participants and there was no difference between the hospitals. To overcome the barriers for integration of PC into health systems, providing education for health professionals and patient relatives, raising awareness in society, financial arrangements and providing infrastructure were suggested. The necessity for planning and programming were emphasized. In our study, the opinions and perspectives of hospital managers and clinical directors were similar to current approaches. Managerial needs for treating cancer in efficient cancer centers, increasing the capacity of health professionals to provide care in every stage of cancer, effective education planning and patient care management were emphasized.

179 Background: Worldwide healthcare systems identify a need to provide better evidence based service models for palliative care. There is little data and no standard tool that informs clinicians’ perceptions on palliative care to identify areas for service improvement and education. We aimed to develop and validate a tool to determine perceptions of hospital staff on palliative care provision, self confidence in providing palliative care, and predictors and barriers to requesting assistance. Methods: 604 hospital clinicians were recruited in person and online from a large metropolitan public tertiary teaching hospital network involving 5 campuses and 2 medical schools. They completed the CPPS (Clinician Palliative Perception Scale). Principal components analysis, exploratory factor analysis, and logistic regression were performed to examine the factor structure and relationship to clinical practice. Results: Four factors were extracted: confidence in providing palliative care, requesting assistance, global perceptions on palliative care provision, and barriers to referring. Increased confidence was significantly associated with increased likelihood of referring or requesting assistance and also associated with a good global perception on palliative care provision. Confidence was also significantly associated with years of experience and with spending &gt; 50% time looking after dying patients. Good perception of palliative care provision was highest among oncologists. Conclusions: This is the largest quantitative study ever done looking at perceptions of palliative care provision among health professionals. The CPPS is a valid and reliable tool useful for both practice and research. Its 4 identified constructs are consistent with literature on perceptions and utilisation of palliative care services. Barriers to referring involved misconceptions that palliative care would prematurely shorten patient lifespans. Others did not refer due to confidence in their own skill. This tool can be used to correlate these constructs against other solid outcome measures to assist in service improvement and identifying research needs. It can also be used to determine clinicians’ educational requirements.

BackgroundFor children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries.MethodsOnline survey with in-country experts from N = 33 European countries.ResultsPediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service.ConclusionsPediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.