"Building palliative care capacity in cancer treatment centres: a participatory action research".

INTRODUCTION: There is a significant lack of palliative care access and service delivery in the Indian cancer institutes. In this paper, we describe the development, implementation, and evaluation of a palliative care capacity-building program in Indian cancer institutes. METHODS: Participatory action research method was used to develop, implement and evaluate the outcomes of the palliative care capacity-building program. Participants were healthcare practitioners from various cancer institutes in India. Training and education in palliative care, infrastructure for palliative care provision, and opioid availability were identified as key requisites for capacity-building. Researchers developed interventions towards capacity building, which were modified and further developed after each cycle of the capacity-building program. Qualitative content analysis was used to develop an action plan to build capacity. Descriptive statistics were used to measure the outcomes of the action plan. RESULTS: Seventy-three healthcare practitioners from 31 cancer treatment centres in India were purposively recruited between 2016 and 2020. The outcome indicators of the project were defined a priori, and were audited by an independent auditor. The three cycles of the program resulted in the development of palliative care services in 23 of the 31 institutes enrolled in the program. Stand-alone palliative care outpatient services were established in all the 23 centres, with the required infrastructure and manpower being provided by the organization. Morphine availability improved and use increased in these centres, which was an indication of improved pain management skills among the participants. The initiation and continuation of education, training, and advocacy activities in 20 centres suggested that healthcare providers continued to remain engaged with the program even after the cessation of their training cycle. CONCLUSION: This program illustrates how a transformational change at the organizational and individual level can lead to the development of sustained provision of palliative care services in cancer institutes.

Preparedness to Face the COVID-19 Pandemic in Hospice and Palliative Care Services in the Asia-Pacific Region: A Rapid Online Survey.

BACKGROUND: Hospice and palliative care services provision for COVID-19 patients is crucial to improve their life quality. There is limited evidence on COVID-19 preparedness of such services in the Asia-Pacific region. AIM: To evaluate the preparedness and capacity of hospice and palliative care services in the Asia-Pacific region to respond to the COVID-19 pandemic. METHOD: An online cross-sectional survey was developed based on methodology guidance. Asia-Pacific Hospice and Palliative Care Network subscribers (n = 1551) and organizational members (n = 185) were emailed. Descriptive analysis was undertaken. RESULTS: Ninety-seven respondents completed the survey. Around half of services were hospital-based (n = 47, 48%), and public-funded (n = 46, 47%). Half of services reported to have confirmed cases (n = 47, 49%) and the majority of the confirmed cases were patients (n = 28, 61%). Staff perceived moderate risk of being infected by COVID-19 (median: 7/10). > 85% of respondents reported they had up-to-date contact list for staff and patients, one-third revealed challenges to keep record of relatives who visited the services (n = 30, 31%), and of patients visited in communities (n = 29, 30%). Majority of services (60%) obtained adequate resources for infection control except face mask. More than half had no guidance on Do Not Resuscitate orders (n = 59, 66%) or on bereavement care for family members (n = 44, 51%). CONCLUSION: Recommendations to strengthen the preparedness of palliative care services include: 1) improving the access to face mask; 2) acquiring stress management protocols for staff when unavailable; 3) reinforcing the contact tracing system for relatives and visits in the community and 4) developing guidance on patient and family care during patient's dying trajectory.

Mechanical Stiffness Controls Dendritic Cell Metabolism and Function.

Stiffness in the tissue microenvironment changes in most diseases and immunological conditions, but its direct influence on the immune system is poorly understood. Here, we show that static tension impacts immune cell function, maturation, and metabolism. Bone-marrow-derived and/or splenic dendritic cells (DCs) grown in vitro at physiological resting stiffness have reduced proliferation, activation, and cytokine production compared with cells grown under higher stiffness, mimicking fibro-inflammatory disease. Consistently, DCs grown under higher stiffness show increased activation and flux of major glucose metabolic pathways. In DC models of autoimmune diabetes and tumor immunotherapy, tension primes DCs to elicit an adaptive immune response. Mechanistic workup identifies the Hippo-signaling molecule, TAZ, as well as Ca2+-related ion channels, including potentially PIEZO1, as important effectors impacting DC metabolism and function under tension. Tension also directs the phenotypes of monocyte-derived DCs in humans. Thus, mechanical stiffness is a critical environmental cue of DCs and innate immunity.

End of life experiences of patients with advanced cancer in Myanmar: Results from the APPROACH study.

BACKGROUND: Access to palliative care services is essential for attaining universal health coverage for patients with a terminal cancer. Despite this, many patients with advanced cancer in low-income countries, such as Myanmar, suffer at the end of life (EOL) due to little or no access to palliative care. However, actual evidence on EOL experiences of cancer patients in Myanmar is lacking. This paper aims to describe various dimensions of EOL experiences among patients with an advanced cancer from the largest public hospital in Myanmar. METHODS: We surveyed 195 patients with stage IV cancer seeking care from outpatient oncology clinics to assess their quality of life, pain severity, pain medications taken, quality of communication with doctors, nursing care and health care coordination, and desire to end life sooner. We assessed socioeconomic status (SES) differences in each patient outcome using separate multivariate linear/logistic regressions. RESULTS: Forty-one percent of the patients in our sample reported that they wish their life would end sooner. Low SES cancer patients had significantly worse quality of life, reported poor health care coordination and were more likely to report severe pain compared to high SES cancer patients visiting the same hospital. CONCLUSION: To improve quality of life and pain management and to reduce EOL distress among patients with advanced cancer, there is a pressing need to develop and invest in hospital and community-level palliative care services in Myanmar.

Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

Ensuring and Restoring Balance on Access to Controlled Substances for Medical and Scientific Purposes: Joint Statement from Palliative Care Organizations.

The central principle of "balance" represents the dual obligation of governments to establish a system of control that ensures the adequate availability of controlled substances for medical and scientific purposes while simultaneously preventing their nonmedical use, diversion, and trafficking, two primary goals of the international control system. On the one hand, although strong opioids, including morphine, are absolutely necessary for the relief of severe pain, legitimate access to opioids for pain treatment and palliative care is lacking in the majority of the world's countries. On the other hand, in a few high-income countries with higher consumption of prescription opioids, diversion and nonmedical use are increasingly prevalent. This report presents examples of unbalanced systems and a joint statement from global and regional palliative care organizations to promote development of balanced systems for optimal public health outcomes. Although nonmedical use of controlled substances poses a risk to society, the system of control is not intended to be a barrier to their availability for medical and scientific purposes, nor to interfere in their legitimate medical use for patient care. As representatives of palliative care organizations, we urge heads of state to act and to take measures to ensure and restore balanced systems in their countries and call on public health leaders and regulators to work together.

Palliative care development in the Asia-Pacific region: an international survey from the Asia Pacific Hospice Palliative Care Network (APHN).

BACKGROUND: Although palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated. OBJECTIVES: This survey aimed to clarify the current status of palliative care in the Asia-Pacific region. METHODS: Questionnaires were sent to a representative physician of each member country/region of the Asia Pacific Hospice Palliative Care Network (APHN). The questionnaire examined palliative care service provision, information regarding physician certification in palliative care, the availability of essential drugs for palliative care listed by the International Association for Hospice and Palliative Care (IAHPC) and the regulation of opioid-prescribing practice. RESULTS: Of the 14 member countries/regions of the APHN, 12 (86%) responded. Some form of specialist palliative care services had developed in all the responding countries/regions. Eight member countries/regions had physician certifications for palliative care. Most essential drugs for palliative care listed by the IAHPC were available, whereas hydromorphone, oxycodone and transmucosal fentanyl were unavailable in most countries/regions. Six member countries/regions required permission to prescribe and receive opioids. CONCLUSIONS: The development of palliative care is in different stages across the surveyed countries/regions in the Asia-Pacific region. Data from this survey can be used as baseline data for monitoring the development of palliative care in this region.

Paediatric palliative care in the Asia Pacific region: where are we now?

Paediatric palliative care services have increased both in numbers and capacity around the world in response to the needs of children living with life-limiting conditions. Members of the Asia Pacific Hospice Network, who render care to children, have increasingly realised the need to map existing services for enhanced collaborative, educational and advocacy efforts. An online survey was conducted over 2 months among professionals in the region to document current service provision, and at the same time to explore individual training needs and practice challenges. A questionnaire crafted through consensus by members of a new special interest group within the network was used to collect data. 59 distinct responses from 16 countries were obtained to build a directory, which has already been circulated. Content analyses of narrative responses yield further findings. Half of these services catered to adults as well as to children. Staffing and service provision varied across the region but most members worked in teams consisting of multidisciplinary professionals. Numerous service and funding models were found, reflecting wide differences in local conditions and responses to diverse patient populations unique to paediatric palliative care. The highest training needs centred around bereavement and spiritual care. Capacity and funding issues were expected, but significant lack of support by paediatricians was found to be alarming and warrants further study. Amid the heterogeneity, these services share common struggles and face similar needs. Identifying individual profiles of different services potentially helps to draw everyone together, towards a common vision, and towards creating opportunities for sharing of expertise and experience.

Place of Care at End of Life: What Factors Are Associated With Patients' and Their Family Members' Preferences?

BACKGROUND: Few Asian studies have elucidated factors influencing patients and their family members on their preferred place of care at the end of life. This pilot study describes the perceptions of Singaporean patients with cancer and their family members that affect their choices in place of care. METHODOLOGY: Patients with cancer and their family members were surveyed at a tertiary hospital in Singapore. This convenience sample was recruited from April to July 2012. RESULTS: Fourteen pairs of patients and their family members (N = 28) were recruited. A majority of patients (64.3%) and family members (71.4%) were found to have a preferred place of care at the end of life. Of the respondents who expressed a preference (n = 19), 88.9% of patients and 90.0% of family members named "home" as their preferred place of care. Quality of care at home was rated "good" or "excellent" by all patients and 85.7% of family members. CONCLUSION: Home is the most favored choice among patients and family members who have a preferred place of care.

The Functional Living Index-Cancer is a reliable and valid instrument in Chinese cancer patients.

PURPOSE: To evaluate the linguistic and psychometric properties of the Functional Living Index-Cancer (FLIC) in assessing the quality of life of Chinese cancer patients. METHODS: The English FLIC was translated into Traditional Chinese by the standard forward-backward procedure. After cognitive debriefing, a Traditional Chinese FLIC was administered to 500 cancer patients in a major public hospital in Hong Kong. Of which, 200 were invited to complete the questionnaire in 2 weeks. To identify a scale structure appropriate to Chinese, exploratory and confirmatory factor analyses were performed on two randomly split halves of the sample. RESULTS: We identified five scales of the Traditional Chinese FLIC which assess the physical, psychological, hardship, nausea and social aspects. These five scales and the overall scale demonstrated satisfactory fit and had the alpha coefficient ranged from 0.68 to 0.92. The intra-class correlation coefficient ranged from 0.67 to 0.88. In addition, all FLIC scales were negatively associated with the Eastern Cooperative Oncology Group performance status and, also except for the psychological scale, had lower scores in patients who were treated by chemotherapy. CONCLUSIONS: The Traditional Chinese FLIC is an appropriate health indicator for Chinese cancer patients.

The practice of nondisclosure of advanced cancer diagnosis in Singapore: a continuing challenge.

INTRODUCTION: The traditional family-centred approach to cancer management in Singapore often leads to nondisclosure of diagnosis to patients with advanced cancer. This study aimed to determine the rate of nondisclosure to such patients in Singapore, and compare it against the rate of nondisclosure to patients' families and that of a study conducted in 1992. METHODS: Consecutive patients (n = 100) with advanced cancer who were referred to a palliative home care service in 2004 were studied retrospectively. Comparison between the 1992 and present study groups was performed using chi-square and Fisher's exact tests. Multivariate logistic regression was applied to patient age, Eastern Cooperative Oncology Group (ECOG) performance status, gender and ethnicity to identify factors associated with nondisclosure. RESULTS: The overall nondisclosure rate among patients with advanced cancer was 23% (23/100), compared to only 2% (2/99) among their families (p < 0.001). The nondisclosure rates among ECOG 0-2 and ECOG 3-4 patients were 11% (7/62) and 42% (16/38), respectively (p < 0.001). There was no significant improvement in the nondisclosure rate among ECOG 3-4 patients when compared to the 1992 study (p = 0.94). It was more likely for nondisclosure to occur among patients aged ≥ 70 years (p < 0.001; odds ratio [OR] 14.77, 95% confidence interval [CI] 3.68-59.26) and those with poor ECOG performance status (p = 0.019; OR 4.0, 95% CI 1.26-12.73). There was no significant association between nondisclosure and gender or ethnicity (p > 0.05). CONCLUSION: Disclosure of diagnosis to patients with advanced cancer remains a challenge in Singapore. The relationship between nondisclosure and advanced age, as well as nondisclosure and poor ECOG performance status, needs to be clarified with further studies.

Measurement properties of the eight-item abbreviated functional assessment of cancer therapy--breast symptom index and comparison with its 37-item parent measure.

CONTEXT: The Functional Assessment of Cancer Therapy--Breast Symptom Index (FBSI) is an eight-item instrument extracted from the Functional Assessment of Cancer Therapy--Breast (FACT-B). There has been no formal assessment of this eight-item version. OBJECTIVES: This study aimed to examine the measurement properties of and comparability between the English and the Chinese versions of the FBSI and to compare it with its parent instrument, the FACT-B, in breast cancer patients in Singapore. METHODS: This was an observational study of 271 breast cancer patients. Known-group validity of FBSI scores was assessed using four health indicators. Convergent and divergent validity was examined by correlation coefficients between the FBSI and the FACT-B. Responsiveness was assessed in relation to longitudinal changes in performance status. Test-retest reliability was evaluated by the intraclass correlation coefficient. Multiple regression analyses were performed to compare the scores on the two language versions. Receiver operating characteristic curve analyses were used for comparison between the FBSI and the FACT-B. RESULTS: For both language versions, the FBSI demonstrated known-group validity, convergent and divergent validity, and sufficient test-retest reliability (intraclass correlation coefficient = 0.75-0.77). The English version was responsive to changes in performance status. The Chinese version was responsive to decline in performance status, but there was no conclusive evidence about its responsiveness to improvement in performance status. No practical significant difference was found in the outcomes between the two language versions despite minor difference in one item. The FBSI performed comparably with the FACT-B. CONCLUSION: The English and Chinese versions of the FBSI are valid and reliable and provide comparable FBSI scores. The English version is responsive to change, whereas the responsiveness of the Chinese version warrants further study.

The English and Chinese versions of the five-level EuroQoL Group's five-dimension questionnaire (EQ-5D) were valid and reliable and provided comparable scores in Asian breast cancer patients.

OBJECTIVE: To examine the measurement properties of and comparability between the English and Chinese versions of the five-level EuroQoL Group's five-dimension questionnaire (EQ-5D) in breast cancer patients in Singapore. METHODS: This is an observational study of 269 patients. Known-group validity and responsiveness of the EQ-5D utility index and visual analog scale (VAS) were assessed in relation to various clinical characteristics and longitudinal change in performance status, respectively. Convergent and divergent validity was examined by correlation coefficients between the EQ-5D and a breast cancer-specific instrument. Test-retest reliability was evaluated. The two language versions were compared by multiple regression analyses. RESULTS: For both English and Chinese versions, the EQ-5D utility index and VAS demonstrated known-group validity and convergent and divergent validity, and presented sufficient test-retest reliability (intraclass correlation = 0.72 to 0.83). The English version was responsive to changes in performance status. The Chinese version was responsive to decline in performance status, but there was no conclusive evidence about its responsiveness to improvement in performance status. In the comparison analyses of the utility index and VAS between the two language versions, borderline results were obtained, and equivalence cannot be definitely confirmed. CONCLUSION: The five-level EQ-5D is valid, responsive, and reliable in assessing health outcome of breast cancer patients. The English and Chinese versions provide comparable measurement results.

Understanding the concept of a "good death" among bereaved family caregivers of cancer patients in Singapore.

OBJECTIVE: The aim of this study was to examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients. METHOD: The data were gathered from five focus group discussions and one face-to-face qualitative interview conducted over 8 months among 18 bereaved family caregivers recruited from a local hospice. The transcripts of the focus groups and the interview were entered into NVivo Version 8 and were analyzed using the thematic approach. RESULTS: A good death may be understood as having the biopsychosocial and spiritual aspects of life handled well at the end of life. Five major themes were identified. These were preparation for death, family and social relationships, moments at or near death, comfort and physical care, and spiritual well-being. Differences were also noted in what is important at the end of life between the patients and caregivers. Having a quick death with little suffering was perceived to be good by the patient, but the family caregiver wanted to be able to say a final goodbye to the patient. Patients tend to prefer not to die in their children's presence but the children wished to be present for the final moment. In addition, family caregivers reported it was important for them to be able to give the patients permission to die, to feel recognized for the efforts made, and to have had a fulfilling caregiving experience. SIGNIFICANCE OF RESULTS: Whereas there are global attributes of a good death, our findings suggest that patients and family caregivers may define a good death differently. Therefore, there is a need to respect, address, and reconcile the differences, so that all parties may have a good experience at the end of a person's life.

Comparison of the measurement properties between a short and generic instrument, the 5-level EuroQoL Group's 5-dimension (EQ-5D-5L) questionnaire, and a longer and disease-specific instrument, the Functional Assessment of Cancer Therapy-Breast (FACT-B), in Asian breast cancer patients.

PURPOSE: To compare the measurement precision and related properties between the 5-level EuroQoL Group's 5-dimension (EQ-5D-5L) questionnaire and the Functional Assessment of Cancer Therapy-Breast (FACT-B) questionnaire in assessing breast cancer patients. METHODS: An observational study of 269 Singaporean breast cancer patients. To compare discriminative ability and responsiveness, the effect sizes (in standard deviation) of the EQ-5D-5L and the FACT-B in relation to health indicators and the change in performance status or quality of life were estimated. Test-retest reliability was examined using the intraclass correlation (ICC). RESULTS: Using performance status, evidence of disease, and treatment status as the criteria, the differences (FACT-B minus EQ-5D-5L) in the effect size for discriminative ability were negative or closed to zero, and the 90% confidence intervals totally fell within the zone that indicated the non-inferiority of the EQ-5D-5L. For responsiveness and test-retest reliability, the confidence intervals of the differences in effect size and ICC overlapped the non-inferiority margin; thus, non-inferiority in these two aspects could neither be confirmed nor rejected. CONCLUSIONS: The EQ-5D-5L was non-inferior to the FACT-B in discriminating breast cancer patients with different health conditions cross-sectionally. The EQ-5D-5L serves as a reasonable alternative or supplementary instrument to the FACT-B in assessing breast cancer patients' health outcomes.

The physician-patient relationship in treatment decision making at the end of life: a pilot study of cancer patients in a Southeast Asian society.

BACKGROUND: The traditional relationship between patient and physician in East Asian society has often been described as "paternalistic." However, in an increasingly Westernized world, our knowledge of how patients perceive the role of the physician in their decision making regarding treatment is lacking. OBJECTIVE: This article is part of a larger pilot study exploring the patient-physician dynamic on decision making among Southeast Asian palliative cancer patients. We explore: (1) influence of physicians, (2) the effect of symptom control and quality of life, and (3) dynamics and communication of physicians. DESIGN: An interviewer-administered questionnaire was distributed, with 18 questions related to physician-patient interactions asked. Most questions followed a three point scale: "agree," "neutral," and "disagree," and spontaneous answers beyond this framework were recorded. SETTING/PARTICIPANTS: Thirty patients from the palliative care service were interviewed, including inpatients at Singapore General Hospital and those attending outpatient clinics at the National Cancer Centre. RESULTS: Patients said that they themselves and their physicians were the main influences (80% each), over family members (48.3%). Some patients (26.7%) felt that symptoms were not well controlled, and 42.9% identified low mood or anxiety. Some patients (44.8%) felt that their condition had an effect on decision making. Most patients (89.3%) had a good relationship with the staff, with >80% being comfortable with discussions held. However, 20.7% of patients felt dissatisfied with the information provided, and 62.1% of patients wanted full disclosure of information. SIGNIFICANCE OF RESULTS: Patients appeared to place highest regard in both autonomy and physician input in making decisions, accompanied by an increased desire for more information. These reflect deviation away from traditional thinking of paternalistic doctoring in East Asia.

Improvements in end-of-life care with a protocol-based pathway for cancer patients dying in a Singapore hospital.

INTRODUCTION: More than half of all deaths in Singapore occur in hospitals. Little is known about the quality of care received by dying patients in hospitals. The Liverpool Care Pathway (LCP) provides a framework of providing good end-of-life care for dying patients and has been used with success in the United Kingdom (UK). In this study, we investigate whether adoption of a modified LCP in a Singapore hospital translated to better end-of-life care for cancer patients. MATERIALS AND METHODS: The LCP was adapted and implemented as a pilot project on an oncology ward in Singapore General Hospital. A baseline review of 30 consecutive death records was performed, followed by a 4-month pilot and post-implementation audit of 30 consecutive patients on the adapted LCP. RESULTS: Five types of end-of-life symptoms were analysed. There was only 1 uncontrolled symptom at death in the post-implementation group compared to 24 uncontrolled symptoms in the retrospective audit group. The prescription of breakthrough medications for symptom control increased from 21% in the retrospective audit group to 79% in the post-implementation group. Inappropriate monitoring was discontinued in 25 patients in the post-implementation group compared to none in the retrospective audit group. The documentation of resuscitation status and religion of the patient was improved, achieving full documentation in the post-implementation group. CONCLUSION: This study shows promising results for improving end-of-life care in cancer patients with a protocol-based pathway in a Singapore hospital. Extension of this care pathway to other settings should be explored to maximise its benefits to patients dying from all causes in hospital.

Supportive, palliative, and end-of-life care for patients with cancer in Asia: resource-stratified guidelines from the Asian Oncology Summit 2012.

The burden of cancer in Asia is high; 6·1 million new cases were diagnosed in the continent in 2008, which accounted for 48% of new cases worldwide. Deaths from cancer are expected to continue to rise because of ageing populations and modifiable risk factors such as tobacco and alcohol use, diet, and obesity. Most patients who are diagnosed with cancer in Asia have advanced disease that is not amenable to curative treatment, which means that they are likely to have pain and other symptoms and psychosocial concerns. These burdens vary with the economic and political situation of the different countries and are affected by such factors as an absence of screening programmes, insufficient cancer diagnostic and treatment services (especially in sparsely populated and rural areas), legal restrictions on access to drugs to relieve pain, and a medical culture in which quality-of-life considerations are undervalued in relation to imperatives to treat. These issues could be ameliorated by increased investment in cancer screening, removal of restrictions on prescription of opioids, and improvements in medical education to increase recognition of treatment futility. Supportive, palliative, and end-of-life care offer the potential to enhance quality of life, improve pain control, and reduce suffering for patients with cancer and their families, and to give patients a dignified death. All patients should have access to such care-in resource-rich regions these services should be integrated into oncology services, whereas in resource-poor regions they should be the main focus of treatment. The form of care should depend on the economic circumstances within and across countries, and recommendations are made across four resource classifications (basic to maximal) to take account of the diversity of settings in Asia.