The complexities of communicating palliative care in Chinese-based languages

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

Public Awareness and Perceptions of Palliative and Comfort Care

BackgroundThe prevalence of dementia is increasing worldwide and many people with the condition require some level of palliative care. However, the trajectories of function and symptom burden in palliative care services at the end of life remain unclear. This study aimed to describe and compare the longitudinal trajectories of function and symptom burden among patients with dementia between hospital versus palliative community care services in the last two weeks of life.MethodsA retrospective cohort study used data from the Australian Palliative Care Outcomes Collaboration. Patients with dementia who died between 1 January 2013 and 31 December 2020 from the Australian Palliative Care Outcomes Collaboration. Four validated clinical instruments were used to collect outcomes on each individual’s function and symptom distress and severity. Multilevel models were used to estimate the differences in clinical trajectories between hospital and community-based palliative care in the last two weeks of life.ResultsPatients with dementia tended to have low levels of distress for most symptoms but increasing levels of functional impairment. There were no or only marginally significant differences in the symptom trajectories between the community and hospital groups (OR ranged from 0.57 to 1.97). Although clinical trajectories of function were relatively similar between two groups, statistically higher functional indicators were observed for people when admitted to community palliative care services (OR = 0.42 and 2.27, respectively).ConclusionsOur findings suggest that community-based palliative care services can be as effective as hospital-based care for many patients with dementia nearing the end of life. With appropriate support for families, community-based care could serve as a viable alternative to hospital-based care for some patients in the final stages of dementia.

Cancer and palliative care in Africa.

Previous main body of research on end-life-care in South Korea has focused on developing services quality in hospital settings or service payment system in National Health Insurance Program. The delivery system of hospice and palliative care services has evolved in diverse ways but there is little research on reviewing the past history of development and whole picture of them so far. So, the aim of this study is to review the old hospice and palliative care system and also to introduce the current one supported by the National Health Insurance Program in South Korea. The palliative care or hospice services in South Korea have been available in diverse settings and provided by different organizations (i.e. catholic hospitals or charity organizations). Finally, it was set up in 2004 that the hospice team or official Palliative Care Units (PCUs) was established in hospitals, in order to meet the end-of-life care for the patients with terminal cancer under the Cancer Control Act. The current hospice and palliative care services such as pain management, bereavement services, and counselling can be reimbursed by National Health Insurance program since 2008. Nevertheless hospice and palliative care services are available to dying patients, yet the utilization rate of hospice and palliative care services or the length of stay in the palliative care unit (PCU) is still relatively short compared to other country systems. South Korea is undergoing several efforts to expand the services in PCU along with the development of quality indicators for PCU. Hospice and palliative care services are still new in the health care system and unfamiliar to the public so it requires raising awareness for medical professionals and the public as well as further research.

BackgroundThe 2009 European Society of Cardiology Position statement on Palliative Care in Heart Failure concluded that palliative care should be considered part of comprehensive care provision over the whole disease...

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)

DEAR EDITOR, Palliative care refers to an approach which is envisaged to improve quality of life of patients and their family members who are suffering from life-threatening illnesses.[1] It essentially advocates for a team approach with special emphasis on reduction and relief of suffering through the early detection, appropriate assessment, and treatment of pain and other concerns (physical, psychosocial, or spiritual).[1] In fact, on an annual basis close to 40 million people needs palliative care worldwide, of which more than three-fourth are from low- and middle- income nations (in cases of children–almost 98% are residing in low/middle income nations).[1,2,3] Palliative care has been recommended for a wide range of chronic diseases including cardiovascular diseases, cancers, HIV/AIDS, diabetes mellitus, organ failure, and congenital anomalies.[1,4] Acknowledging the scope and the need of palliative care in the last couple of decades, palliative care has been considered as an integral component of the human right to health.[2] In fact, a comprehensive package of palliative care can significantly decrease the needs of hospitalization, thereby reducing the burden on the public health system.[2,3] The findings of a recently released report suggest that only 10% of the individuals who need palliative care are actually receiving it.[2] Furthermore, the results of a multinational study revealed that only 8.5% nations had well-integrated palliative care services, whereas more than 40% nations had no palliative care services at all.[5] These are quite alarming facts, and a multiple number of barriers such as no priority for palliative care in national health policies;[1] poor awareness among policy makers, health professionals, and community about different aspects of palliative care;[3] lack of training sessions for health professionals;[6] myths and misconceptions prevalent among people (viz., cultural and social beliefs about death and dying, or it is needed only for cancer patients and that too in last few weeks of life, etc.);[1,3] lack of easily accessible and affordable, clinically relevant information;[7] resource constraints;[8] and highly restrictive provisions for the use of morphine/opioid analgesics, thereby denying access to adequate pain relief (due to the belief that easy access may lead to drug abuse)[1,6] have been identified, which together are playing a crucial role in augmenting the unmet need for palliative care. However, the utility of palliative care eventually depends on its personalized approach and provision of integrated health services so that the specific needs of individuals can be addressed.[1,2] To enhance the accessibility of palliative care services and accomplish universal health coverage, the need of the hour is to merge palliative care with all relevant health policies so that it can be delivered at all levels of care.[1] Even though it is true that specialist palliative care is one of the integral components of palliative care, but to ensure sustainable palliative care, it has to be integrated with primary health care and home-based community care.[1,2] In addition, implementation of other interventions such as formulating guidelines pertaining to integrated palliative care across various levels or ethical issues in palliative care;[1,6] improving access to palliative care medicines by modifying national regulations and delivery systems;[2,3] collaborating with UNICEF to enhance palliative care for children;[1,2] ensuring mobilization of resources for palliative care programs;[8,9] increasing awareness among all the stakeholders about palliative care;[6] training health professionals regarding the need and different ways of delivery of palliative care in both hospital and community settings;[2,3] and building mechanisms for monitoring access to global palliative care and evaluation of the palliative care programs[6] can also play a defining role in the expansion of palliative care. In conclusion, the global need for palliative care is expected to rise further owing to the increase in the prevalence of various noncommunicable diseases and increased life expectancy. Therefore, there is a significant need to strengthen and expand the existing palliative care services to the needy so that right to health becomes a universal reality. Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.

Hospices and specialized palliative home care services provide care for people with serious, life-threatening illnesses and those at the end of their lives. Disasters cause severe disruptions that exceed the capacity of structures and processes in a society. Given the increasing frequency and impact of disasters, it is crucial that these services maintain their functions for as long as possible, even under adverse conditions, to protect the people entrusted to their care. The aim of this research was therefore to examine whether and to what extent hospices and specialized palliative home care services in Germany are already prepared for disasters. We used an explorative, quantitative cross-sectional design. The intention was to conduct a full nationwide survey among nurses in team-leading roles in all hospices and specialized palliative home care services in Germany. A self-developed semi-standardized online questionnaire assessed perceived disaster awareness, organizational preparedness, and staff preparation. Descriptive statistics were used to analyze the survey data. A total of 189 nurses in team-leading roles from all parts of Germany responded to the online survey (29% response rate). Overall, respondents considered disaster preparedness to be an important topic, but this has rarely been reflected in corresponding initiatives. 62% of respondents stated that their service does not have a business continuity plan, or that they were unaware of such a plan. An above-average share of respondents expressed the view that the nursing staff of these services should fulfil additional tasks before, during, and after disasters to ensure the safety of those in their care. Although nurses were generally considered competent to carry out these tasks, 70% of respondents agreed that further preparation for disasters was necessary. Our survey data suggest that hospices and specialized palliative home care services in Germany need to improve their disaster preparedness to ensure they can continue to provide specialized hospice and palliative care in times of adversity. This requires organizational initiatives in collaboration with other healthcare and civil protection services, as well as personnel development measures. Nurses in leadership positions could play a key role in this.

BackgroundPalliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context.Methods/DesignUsing the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS). We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patients newly referred to the new service were randomised to either receive the palliative care service immediately (fast-track) or after a 12-week wait (standard best practice). Face to face interviews were conducted at baseline (before intervention), and at 4–6, 10–12 (before intervention for the standard-practice group), 16–18 and 22–24 weeks with patients and their carers using standard questionnaires to assess symptoms, palliative care outcomes, function, service use and open comments. Ethics committee approval was granted separately for the qualitative phase and then for the trial.DiscussionWe publish the protocol trial here, to allow methods to be reviewed in advance of publication of the results. The MRC Framework for the Evaluation of Complex Interventions was helpful in both the design of the service, methods for evaluation in convincing staff and the ethics committee to accept the trial. The research will provide valuable information on the effects of palliative care among non-cancer patients and a method to evaluate palliative care in this context.

PurposeThe purpose of this paper is to determine the cost effectiveness of palliative care on patients in a home health and hospice setting. Secondary data set was utilized to test the hypotheses of this study. Home health care and hospice care services have the potential to avert hospital admissions in patients requiring palliative care, which significantly affects medicare spending. With the aging population, it has become evident that demand of palliative care will increase four-fold. It was determined that current spending on end-of-life care is radically emptying medicare funds and fiscally weakening numerous families who have patients under palliative care during life-threatening illnesses. The study found that a majority of people registering for palliative and hospice care settings are above the age group of 55 years old.Design/methodology/approachDifferent variables like length of stay, mode of payment and disease diagnosis were used to filter the available data set. Secondary data were utilized to test the hypothesis of this study. There are very few studies on hospice and palliative care services and no study focuses on the cost associated with this care. Since a very large number of the USA, population is turning 65 and over, it is very important to analyze the cost of care for palliative and hospice care. For the purpose of this analysis, data were utilized from the National Home and Hospice Care Survey (NHHCS), which has been conducted periodically by the Centers for Disease Control and Prevention’s National Center for Health Statistics. Descriptive statistics, χ2 tests and t-tests were used to test for statistical significance at the p<0.05 level.FindingsThe Statistical Package for Social Sciences (SPSS) was utilized for this result. H1 predicted that patients in the age group of 65 years and up have the highest utilization of home and hospice care. This study examined various demographic variables in hospice and home health care which may help to evaluate the cost of care and the modes of payments. This section of the result presents the descriptive analysis of dependent, independent and covariate variables that provide the overall national estimates on differences in use of home and hospice care in various age groups and sex.Research limitations/implicationsThe data set used was from the 2007 NHHCS survey, no data have been collected thereafter, and therefore, gap in data analysis may give inaccurate findings. To compensate for this gap in the data set, recent studies were reviewed which analyzed cost in palliative care in the USA. There has been a lack of evidence to prove the cost savings and improved quality of life in palliative/hospice care. There is a need for new research on the various cost factors affecting palliative care services as well as considering the quality of life. Although, it is evident that palliative care treatment is less expensive as compared to the regular care, since it eliminates the direct hospitalization cost, but there is inadequate research to prove that it improves the quality of life. A detailed research is required considering the additional cost incurred in palliative/hospice care services and a cost-benefit analysis of the same.Practical implicationsWhile various studies reporting information applicable to the expenses and effect of family caregiving toward the end-of-life were distinguished, none of the previous research discussed this issue as their central focus. Most studies addressed more extensive financial effect of palliative and end-of-life care, including expenses borne by the patients themselves, the medicinal services framework and safety net providers or beneficent/willful suppliers. This shows a significant hole in the current writing.Social implicationsWith the aging population, it has become evident that demand of palliative/hospice care will increase four-fold. The NHHCS have stopped keeping track of the palliative care requirements after 2007, which has a negative impact on the growing needs. Cost analysis can only be performed by analyzing existing data. This review has recognized a huge niche in the evidence base with respect to the cost cares of giving care and supporting a relative inside a palliative/hospice care setting.Originality/valueThe study exhibited that cost diminishments in aggressive medications can take care of the expenses of palliative/hospice care services. The issue of evaluating result in such a physically measurable way is complicated by the impalpable nature of large portions of the individual components of outcome. Although physical and mental well-being can be evaluated to a certain degree, it is significantly more difficult to gauge in a quantifiable way, the social and profound measurements of care that help fundamentally to general quality of care.

United States: Overview of Cancer Pain and Palliative Care

e16611 Background: Many cancer patients (pts) receive chemotherapy at the end of life (EOL) with negative effects on quality of life and high economic burden. Palliative care services and hospice facilities became widely available in Italy during the last decade. We analyzed if this had an impact on chemotherapy use at EOL comparing current data with those obtained in a study carried out in year 2002, where we observed 33% of pts treated with chemotherapy in the last month of life (Giorgi et al. Proc ASCO 22: #6081, 2004). Methods: We performed a retrospective chart review of pts died in year 2010 and treated in three oncology divisions in which palliative care and hospice services have been available since 2004. Results were compared with those obtained in year 2002 when there was no palliative care program in the same oncology units. Results: Clinical records of 335 pts dead during 2010 were reviewed (F 156, M 179). The most frequent tumors were: breast 53 pts, NSCLC 53, colorectal 48, gastric 30, pancreas 16, prostate 13. Median age was 71 years (range 22-96). Seventy-one pts (21 %) received chemotherapy and 16 pts (5 %) targeted therapies in the last month of life (aggregate 26 %). In the last week of life 10 pts received chemotherapy and 8 pts targeted therapies (5 %). One hundred ninety-two pts (57%) entered a palliative care/hospice program managed by oncologists of the same unit: 126 pts home palliative care and 66 pts hospice care. Despite the expansion of standard second and third line chemotherapy and targeted therapy in the oncologist's therapeutic arsenal, we observed a 7 % reduction (21% relative reduction) of cancer-directed interventions in the last month of life. Conclusions: We observed a 21% relative reduction in anticancer treatment provided at the EOL between 2002 and 2010. We believe that most of this reduction can be ascribed to the implementation of palliative care services where oncologists ensure continuity of care. Maintaining a stable oncologist-patient relationship may foster better EOL decisions and utilization of health care resources.

Multiple studies demonstrate most consumers do not know about palliative care. And, since January 2018, California's Medi-Cal Managed Care patients have been eligible for palliative care services under Senate Bill 1004 (SB 1004). Yet, the uptake of palliative care services was underwhelming. The purpose of this study was to explore patient-centered barriers to palliative care. We recruited 27 adult Medicaid managed care patients from community-based sites in Los Angeles and conducted semi-structured qualitative interviews. Each participant was asked questions to elicit their knowledge about, and perspectives on, palliative care as well as their preferred communication approaches for receiving a referral to palliative care. The interviews were audio-recorded and transcribed verbatim. We used a grounded theory approach to guide our analysis of primary themes. Our findings indicated that the barriers to palliative care referrals among this population included lack of knowledge about palliative care and available services; the reliance on, and trust in, primary care physicians for information; language and cultural barriers; housing instability; and patient believing they are neither old enough nor sick enough to need palliative care. These findings emphasize the critical role primary care physicians play in advocating for low-income patients and the necessity for culturally sensitive education about palliative care. Promoting knowledge and understanding of palliative care among both primary care physicians and consumers is critical to ensuring access to care.

IntroductionCanadians have had legal access to medical assistance in dying (MAiD) since 2016. However, despite substantial overlap in populations who request MAiD and who require palliative care (PC) services, policies...