The systemic challenges of non-palliative care professionals caring for end-of-life patients: A lived experience study.

OBJECTIVES: The aims of this study are to identify the challenges faced by non-palliative care professionals (NPCPs) in caring for end-of-life patients; determine how these challenges interact with and influence each other systemically; and advance the theories and practices for supporting NPCPs in the provision of quality end-of-life care beyond the boundaries of palliative medicine. METHODS: A constructivist phenomenological research design with an Interpretive-Systemic Framework of inquiry was adopted. Thirty-five physicians, 35 nurses, and 35 Medical Social Workers who play critical roles in caring for end-of-life patients and belonging to the 9 major medical disciplines of Cardiology, Geriatric, Intensive Care Medicine, Internal Medicine, Nephrology, Neurology, Oncology, Respiratory Medicine, and Surgery were recruited through purposive snowball sampling from 3 major public hospitals. RESULTS: Framework analysis revealed 5 themes and 17 subthemes that illuminate the individual, relational, cultural, institutional, and structural challenges that NPCPs faced in rendering end-of-life care. These challenges influence each other within the health-care ecosystem, serving to perpetuate or heighten care obstacles. SIGNIFICANCE OF RESULTS: This is the first known study exploring the systemic challenges of NPCPs spanning 9 major medical disciplines and encompassing 3 professional stakeholders responsible for the care for end-of-life patients, thus ensuring perspective inclusivity across the health-care system. Recommendations that consider the complexity of the interactions between these systemic challenges are presented in detail.

Trajectories of Suffering in the Last Year of Life Among Patients With a Solid Metastatic Cancer.

BACKGROUND: Reducing suffering at the end of life is important. Doing so requires a comprehensive understanding of the course of suffering for patients with cancer during their last year of life. This study describes trajectories of psychological, spiritual, physical, and functional suffering in the last year of life among patients with a solid metastatic cancer. PATIENTS AND METHODS: We conducted a prospective cohort study of 600 patients with a solid metastatic cancer between July 2016 and December 2019 in Singapore. We assessed patients' psychological, spiritual, physical, and functional suffering every 3 months until death. Data from the last year of life of 345 decedents were analyzed. We used group-based multitrajectory modeling to delineate trajectories of suffering during the last year of a patient's life. RESULTS: We identified 5 trajectories representing suffering: (1) persistently low (47% of the sample); (2) slowly increasing (14%); (3) predominantly spiritual (21%); (4) rapidly increasing (12%); and (5) persistently high (6%). Compared with patients with primary or less education, those with secondary (high school) (odds ratio [OR], 3.49; 95% CI, 1.05-11.59) education were more likely to have rapidly increasing versus persistently low suffering. In multivariable models adjusting for potential confounders, compared with patients with persistently low suffering, those with rapidly increasing suffering had more hospital admissions (ß=0.24; 95% CI, 0.00-0.47) and hospital days (ß=0.40; 95% CI, 0.04-0.75) during the last year of life. Those with persistently high suffering had more hospital days (ß=0.70; 95% CI, 0.23-1.17). CONCLUSIONS: The course of suffering during the last year of life among patients with cancer is variable and related to patients' hospitalizations. Understanding this variation can facilitate clinical decisions to minimize suffering and reduce healthcare costs at the end of life.

Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS): prospective cohort study protocol.

BACKGROUND: Advanced cancer significantly impacts quality of life of patients and families as they cope with symptom burden, treatment decision-making, uncertainty and costs of treatment. In Singapore, information about the experiences of advanced cancer patients and families and the financial cost they incur for end-of-life care is lacking. Understanding of this information is needed to inform practice and policy to ensure continuity and affordability of care at the end of life. The primary objectives of the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study are to describe changes in quality of life and to quantify healthcare utilization and costs of patients with advanced cancer at the end of life. Secondary objectives are to investigate patient and caregiver preferences for diagnostic and prognostic information, preferences for end-of-life care, caregiver burden and perceived quality of care and to explore how these change as illness progresses and finally to measure bereavement adjustment. The purpose of this paper is to present the COMPASS protocol in order to promote scientific transparency. METHODS: This cohort study recruits advanced cancer patients (n = 600) from outpatient medical oncology clinics at two public tertiary healthcare institutions in Singapore. Patients and their primary informal caregiver are surveyed every 3 months until patients' death; caregivers are followed until 6 months post patient death. Patient medical and billing records are obtained and merged with patient survey data. The treating medical oncologists of participating patients are surveyed to obtain their beliefs regarding care delivery for the patient. DISCUSSION: The study will allow combination of self-report, medical, and cost data from various sources to present a comprehensive picture of the end-of-life experience of advanced cancer patients in a unique Asian setting. This study is responsive to Singapore's National Strategy for Palliative Care which aims to identify opportunities to meet the growing need for high quality care for Singapore's aging population. Results will also be of interest to policy makers and researchers beyond Singapore who are interested to understand and improve the end-of-life experience of cancer patients. TRIAL REGISTRATION: NCT02850640 (Prospectively registered on June 9, 2016).

A comparison of attitudes toward length and quality of life between community-dwelling older adults and patients with advanced cancer.

OBJECTIVE: Applying prospect theory to end-of-life decision making, we hypothesize that community-dwelling older adults (CDOAs) will be relatively less inclined towards extending length over improving quality of life compared with patients. We also hypothesize that differences in relative inclination for length over quality of life between the 2 groups will decrease with advancing age. METHODS: We tested these hypotheses by administering the quality-quantity questionnaire to 1067 CDOAs and 320 stage IV cancer patients and applying a linear regression model to assess whether relative inclination for length over quality of life, as estimated by the questionnaire, differed between CDOAs and patients after controlling for differences in sociodemographic characteristics. We also assessed the effect of interaction between age and participant status (CDOA compared to patient) on relative inclination for length over quality of life. RESULTS: Consistent with prospect theory, a lower proportion of CDOAs (26%) than patients (42%) were relatively more inclined towards length over quality of life. Results were significant even after adjusting for differences in sociodemographics (P < .01). With increasing age, the difference in relative inclination between CDOAs and patients increased (P = .01). CONCLUSIONS: Findings indicate that attitudes towards length and quality of life differ by life stage. This has implications for end-of-life care decisions made by CDOAs, such as purchasing health or disability insurance and signing advance directives or care plans.

Variation in physician recommendations, knowledge and perceived roles regarding provision of end-of-life care.

BACKGROUND: There is high variability in end-of-life (EOL) treatments. Some of this could be due to differences in physician treatment recommendations, their knowledge/attitude regarding palliative care, and their perceived roles in treating patients with advanced serious illness (ASI). Thus, the objective of this paper was to identify potential variation in physician recommendations, their knowledge/attitude regarding palliative care and perceived roles in treating ASI patients. METHODS: A cross-sectional survey consisting of vignettes describing patient characteristics that varied by age, expected survival, cognitive status and treatment costs and asked physicians whether they would recommend life-extending treatments for each scenario, was administered to 285 physicians who treat ASI patients in Singapore. Physicians were also assessed on their knowledge/attitude in palliative care. They were administered a best-worst scaling exercise requiring them to select their most and least important role as a physician caring for an ASI patient. RESULTS: There was a wide variation in physician recommendations for life-extending treatments for patients with similar profiles, which can partly be attributed to physician characteristics (years of experience and place of training). Only about one-fourth of the physicians answered all knowledge/attitude questions correctly. Statements assessing knowledge/attitude regarding pain management had the fewest correct responses. The most important perceived role regarding provision of EOL care concerned symptom management. CONCLUSIONS: Results suggest that variation in physician treatment recommendations may be partly related to their own characteristics, raising concerns regarding the EOL care being provided to patients. Efforts should be made to better understand this variation and to provide the physicians with additional training in key aspects of palliative care management.

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.

Increased Bloodborne Pathogen Exposure Hotline Utilization During the COVID-19 Pandemic: An Unexpected Phenomenon.

Background: Mitigating bloodborne pathogen exposure (BBPE) risk among healthcare workers is a major focus of hospital-based occupational health programs. The COVID-19 pandemic has placed added demands on occupational health services for healthcare workers. Its impact on BBPE incidence is unreported. Methods: As part of quality improvement efforts, we examined BBPE case incidence at two affiliated health centers during a 24-month period, 12 months preceding and following the COVID-19 pandemic onset. We used Year 1 to Year 2 change in incidence at the larger health center as the referent value to generate predicted incidence rates at the study health center. We tested the ratio of observed to predicted values at the study health center as a Poisson variable to its expectation. We defined a BBPE consistent with the Occupational Safety and Health Administration (OSHA) Bloodborne Pathogens Standard. Results: The BBPE case incidence at Health Center One (HC1), totaled 46 cases in Year 1, increasing 19% to 55 cases in Year 2. The cumulative incidence at Health Center Two (HC2), the referent facility, was 664 cases in Year 1, declining 24% to 503 in Year 2. The ratio of 55 events at HC1 to the expected incidence of 35, based on the experience at HC2, was 1.6 (p < .05). Discussion/Applications to Practice: The incidence of BBPE events at HC1 paradoxically increased during the COVID-19 pandemic, contrasting to the expected decrease that we observed at HC2. These data suggest that during times of increased stress to employee healthcare delivery from an infectious disease outbreak, the burden of ongoing practice demands may increase.

PROTOCOL: Community-based interventions for initiating early end-of-life conversations in nonterminally Ill adults: a systematic review.

This systematic review aims to answer the following research questions: (1) What are the existing community-based interventions for initiating advance care planning (ACP) conversations and quality end-of-life (EoL) planning behaviours in nonterminally ill adults internationally? (2) What are the effects of community-based interventions on the initiation of ACP conversations and EoL planning behaviours of nonterminally ill adults in the community?

The role of palliative medicine in ICU bed allocation in COVID-19: a joint position statement of the Singapore Hospice Council and the Chapter of Palliative Medicine Physicians.

Facing the possibility of a surge of COVID-19-infected patients requiring ventilatory support in Intensive Care Units (ICU), the Singapore Hospice Council and the Chapter of Palliative Medicine Physicians forward its position on the guiding principles that ought to drive the allocation of ICU beds and its role in care of these patients and their families.

End-of-life management protocol offered within emergency room (EMPOWER): study protocol for a multicentre study.

BACKGROUND: Patients at their end-of-life (EOL) phase frequently visit the emergency department (ED) due to their symptoms, yet the environment and physicians in ED are not traditionally equipped or trained to provide palliative care. This multicentre study aims to measure the current quality of EOL care in ED to identify gaps, formulate improvements and implement the improved EOL care protocol. We shall also evaluate healthcare resource utilisation and its associated costs. METHODS AND ANALYSIS: This study employs a quasiexperimental interrupted time series design using both qualitative and quantitative methods, involving the EDs of three tertiary hospitals in Singapore, over a period of 3 years. There are five phases in this study: (1) retrospective chart reviews of patients who died within 5 days of ED attendance; (2) pilot phase to validate the CODE questionnaire in the local context; (3) preimplementation phase; (4) focus group discussions (FGDs); and (5) postimplementation phase. In the prospective cohort, patients who are actively dying or have high likelihood of mortality this admission, and whose goal of care is palliation, will be eligible for inclusion. At least 140 patients will be recruited for each preimplementation and postimplementation phase. There will be face-to-face interviews with patients' family members, review of medical records and self-administered staff survey to evaluate existing knowledge and confidence. The FGDs will involve hospital and community healthcare providers. Data obtained from the retrospective cohort, preimplementation phase and FGDs will be used to guide prospective improvement and protocol changes. Patient, family and staff relevant outcomes from these changes will be measured using time series regression. ETHICS AND DISSEMINATION: The study protocol has been reviewed and ethics approval obtained from the National Healthcare Group Domain Specific Review Board, Singapore. The results from this study will be actively disseminated through manuscript publications and conference presentations. TRIAL REGISTRATION NUMBER: NCT03906747.

Drug use evaluation of transdermal fentanyl in a tertiary hospital.

OBJECTIVES: The primary objective of the study was to assess the rationale of fentanyl patch initiation and continuation for pain. The secondary objectives were to analyse prescribing pattern between disciplines, monitoring criteria and adverse events profile of fentanyl patch in the inpatient wards for a tertiary hospital. METHODS: A retrospective case series review was undertaken of patients who received transdermal fentanyl for pain from April to June 2013 at the National University Hospital, Singapore. Relevant data were collected from electronic and physical medical records and audit criteria applied for indication, opioid tolerance, dosage regimen, adverse events and monitoring criteria. RESULTS: 40 patients were prescribed fentanyl patches for pain in the study period. 15 patients (62.5%) had one or more problems during initiation of fentanyl patch. Appropriate use during initiation was low with only 9 (38%) patients meeting all the required criteria. Most of the inappropriate use involved a lack of bridging opioids (58%), wrong opioid conversion dose (42%) and use in opioid-naïve patients (42%). In addition, three cases of inappropriate placement were observed. Monitoring for efficacy and adverse effects generally met audit criteria. There was a low incidence of discontinuation (21%) due to its well-tolerated side effect profile. CONCLUSIONS: This study highlighted high incidence of inappropriate initiation of fentanyl patch, and we proposed an in-house guideline to aid physicians in initiating fentanyl patches during admission and to educate nursing staff of the monitoring parameters for efficacy and toxicity.

Targeted therapy at the end of life in advanced cancer patients.

OBJECTIVE: We describe the use of systemic therapy in advanced cancer patients admitted to an acute care hospital, with a focus on targeted therapy. We aim to spotlight the utilization of targeted agents in the last months of life. METHODS: Adult patients (N=252) with advanced solid tumors who died as inpatients in the National University Hospital, Singapore, were included in this retrospective study. Patients' demographic and clinical data were extracted from hospital records. Information on systemic therapy was extracted from the time of diagnosis and all other data limited to the last three months before death. RESULTS: 187 adult patients received palliative systemic therapy from the time of diagnosis, of which 125 (66.8%) received it within three months of death. Of patients receiving only nontargeted systemic treatment (n=106), 60 (56.6%) and 26 (24.5%) received it within three months and one month of death respectively. Comparatively, 81 patients received palliative targeted systemic therapy, of which 65 (80.3%) and 40 (49.4%) had treatment within three months and one month of death respectively (p=0.001 and p<0.001). Targeted therapy was first initiated in the last three months of life in 38 patients. Oral agents targeting epidermal growth factor receptor (lung cancer patients) and vascular endothelial growth factor receptor (non-lung cancer patients) pathways were commonly employed. Lung cancer patients were more likely to have targeted therapy as their last line of systemic therapy: 26/54 lung cancer patients compared with 29/133 non-lung cancer patients (48.1% versus 21.8%, p<0.001). CONCLUSIONS: Targeted therapy is used in more than half of patients who received systemic therapy within three months of death. The degree to which these agents are being utilized near the end of life suggests the need to reexamine the risk/benefit profile of targeted therapy for this population, and the decision-making process around their use.

Non-directive genetic counselling - respect for autonomy or unprofessional practice?

Historically, genetic counselling was developed in the West and in the field of neonatal medicine, and a non-directive approach has been its central ethos since the 1950s to 60s. In today's changing world, the question of whether non-directive genetic counselling with its emphasis on patient autonomy may in some occasions be perceived as unprofessional practice. Through these 4 case studies in cancer genetic counselling, we seek to highlight the conundrums, dilemmas and various other considerations of patients and their families faced during the genetic counselling process. We also address the pitfalls of a 'one-size fi ts all' approach of non-directive counselling and how we could best practice cancer genetic counselling in the Singapore context, taking into consideration respect for patient autonomy and healthcare professionalism.

Targeted therapy at the end of life for patients with lung cancer.

The use of chemotherapy at the end of life is increasing. We characterized the use of targeted therapies in relation to the end of life in non-small cell lung cancer (NSCLC) patients who died in our institution. The frequency of systemic anticancer therapy usage at the end of life was consistent with that reported in other recent studies. The use of targeted therapies, especially epidermal growth factor receptor (EGFR) tyrosine kinase inhibitors (TKIs), was strikingly more common than that of conventional chemotherapy. Targeted therapy was frequently initiated within the last 3 months of life. Targeted agents were also used in sequence, in combination, and in investigational protocols. We conclude that targeted agents, in particular EGFR TKIs, are now the drugs of choice in the systemic treatment of NSCLC at the end of life.