PURPOSE: The diagnosis of a terminal disease bears existential challenges, which activate the attachment system. Attachment insecurity, as well as existential resources, such as spiritual well-being, influences patients' extent of psychological distress. Knowledge about the interrelation of these constructs is limited. Based on current research, we assume spiritual well-being to mediate the association of attachment insecurity and psychological distress.
METHODS: We obtained data from the baseline measurement of a randomized controlled trial in advanced cancer patients. Patients were sampled from the University Medical Centers of Hamburg and Leipzig, Germany. Main outcome measures included the Patient Health Questionnaire (PHQ-9), the Death and Dying Distress Scale (DADDS), the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp), and the Experience in Close Relationships Scale (ECR-M16) for assessing attachment insecurity. We tested the mediation hypothesis with two regression analyses using bootstrapping procedure.
RESULTS: A total of 190 patients were included. Spiritual well-being mediated the association of attachment insecurity and depression (R2 = 11%), as well as death anxiety (R2 = 15%), in fearful-avoidant attached patients. Neither dismissingly nor preoccupied attached patients differ in terms of spiritual well-being and psychological distress in comparison with secure attached patients.
CONCLUSION: Spiritual well-being plays a relevant role in advanced cancer patient's mental health through mediating the association of attachment and psychological distress. Developing a better understanding of the interdependency of the constructs of spiritual well-being and attachment can help to develop individually tailored advanced cancer care programs and psychotherapeutic interventions.
PURPOSE: Although it is accepted that in general spousal caregivers of patients with cancer are under high emotional and physical strain, little is known about the quality of life specifically among spousal caregivers of older cancer patients. The aim of the current study is to explore the emotional toll of spousal caregivers of cancer patients aged 65-85 years.
METHODS: This study surveyed 242 spousal caregivers of patients = 65 years old, diagnosed with cancer, treated with curative or palliative intent, and within 6 months of treatment at enrollment. Standardized measures completed by the caregivers included depression measure (Geriatric Depression Scale); distress (Distress Thermometer); and social support (the Cancer Perceived Agents of Social Support). Logistic regression analyses were used in order to identify the predictor of clinical depression and distress. The analyses were adjusted for patient (sociodemographic, functional performance, and medical status) and caregiver (sociodemographic and social support) factors.
RESULTS: Among the caregivers, the frequencies of clinical depression and distress were 16.5% and 28% respectively. Increasing patient age and time from diagnosis were associated with reduced levels of caregiver depression. Higher levels of friends and spousal support (support from the patients) were associated with non-clinical levels of depression and distress.
CONCLUSION: Increasing patient age and caregiver's perceived spousal support may both have a positive effect on caregivers' levels of depression. This can be utilized by clinicians in the process of empowering older patients and their spousal caregivers to confront the challenges of cancer treatment into advanced old age.
BACKGROUND AND OBJECTIVES: Clinical management for terminal patients should consider various aspects, particularly the patient's functional assessment, which correlates well with the short-term prognosis. The prognosis could improve if the presence of symptoms strongly associated with a poorer progression were included. The study's main objective was to assess whether the prognosis according to the Palliative Performance Scale (PPS) improved with the presence/absence of pain-dyspnoea-delirium symptoms. The secondary objective was to determine caregiver satisfaction with the transfer to medium-stay palliative care units (MSPCUs), which are prepared for medium stays of approximately one month.
PATIENTS AND METHOD: We conducted a prospective, observational, multicentre (regional) study that analysed survival in MSPCUs according to the PPS dichotomized to > 20% and = 20%. We estimated the mean survival functions using the Kaplan-Meier method and compared them according to the Cox proportional hazards ratios (HR). Caregiver satisfaction was studied using an anonymous self-administered Likert questionnaire.
RESULTS: The study included 130 patients. The PPS = 20% and PPS > 20% subgroups had a median survival of 6 (3-13) days and 21 (11-42) days, respectively, with an unadjusted mortality HR 3.1-fold greater in the PPS = 20% subgroup. The HR did not change when adjusted for the symptoms. Eighty-three percent of the caregivers found the transfer beneficial, and 40% observed better patient care.
CONCLUSIONS: For patients transferred from general hospitals to MSPCUs, PPS scores = 20% were associated with survival shorter than one week, with a 3-fold higher mortality HR than patients with PPS scores > 20%, without the analysis adjusted for the presence of pain-dyspnoea-delirium providing greater prognostic accuracy. The caregivers found benefits mainly in the convenience of the facilities and distance.
INTRODUCTION: Myocardial infarction (MI) remains a leading cause of mortality. Palliative care (PC) has recently expanded in scope to include noncancer-related conditions. There is little data available regarding the use of PC in critical MI patients.
METHODS: We used discharge data from the National Inpatient Sample for the years 2012 to 2014. We examined discharges with a primary diagnosis of MI. We measured the rate of PC referral, trend in utilization during the study period and possible predictors of PC utilization.
RESULTS: Among 1 667 520 discharges of those patients =18 years of age and with a primary diagnosis of MI, use of PC was seen in 2.5% of all patients and in 24% of patients who died. In a multivariable logistic regression, we found the presence of cancer, cardiogenic shock, dementia, stroke, hemiplegia, the use of circulatory support, and mechanical ventilation were associated with higher likelihood of PC referral. Palliative care referral increased during the study period, odds ratio of 1.18 per year (95% confidence interval: 1.14-1.21; P value <.001). Palliative care was not associated with prolonged length of stay.
CONCLUSION: Several comorbidities were associated with the use of PC, most notably the use of mechanical ventilation and the presence of metastatic cancer. There was a trend of increasing use of PC during the study period.
CONTEXT: Taste and smell abnormalities (TSA) occur throughout the cancer trajectory regardless of cancer primary site and contribute to cancer-associated malnutrition. TSA etiology is poorly understood. Tumor-related inflammation is a possible cause.
OBJECTIVE: This study examined the prevalence, characteristics, and severity of TSA in advanced cancer and explored the relationship between TSA and nutritional status. No previous study combined subjective and objective measures for both taste and smell assessment in this population.
METHOD: Consecutive advanced cancer hospice patients were recruited. A modified version of the "Taste and Smell Survey" assessed subjective TSA. Validated taste strips and "Sniffin' Sticks" were the objective measures. The abridged patient-generated subjective global assessment evaluated nutritional status.
RESULTS: A 93% prevalence of TSA in 30 patients with advanced cancer was identified. When subjective and objective evaluations were combined, 28 had taste abnormalities, 24 smell abnormalities, and 24 both. Taste changes included "persistent bad taste" (n = 18) and changes in how basic tastes were perceived. Half reported smell was not "as strong" as prediagnosis, while more than half (n = 16) had an objective smell abnormality. Most (97%) were at risk of malnutrition. Fatigue, dry mouth, early satiety, and anorexia were common nutrition-impact symptoms. No statistically significant relationship was found between TSA and malnutrition scores.
CONCLUSIONS: TSA were highly prevalent. Subjective taste and smell changes did not always accord with objective TSA, suggesting both assessments are valuable. TSA characteristics varied, and particular foods tasted and smelled different and were not enjoyed as before. TSA are common, high-impact problems in advanced cancer.
Palliative care was first developed for patients with terminal cancer. According to the definition of World Health Organization (WHO), palliative care is “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness.” (WHO, 2019a). Based on WHO’s statistics, the number of deaths caused by chronic non-cancer conditions is far more higher than by terminal cancer (WHO, 2019b). Although the benefits of providing palliative care to non-cancer patients have been increasingly recognized, compared to cancer patients, the use of palliative services among patients with non-cancer diseases is extremely low and the timing of referrals is typically late (Gadoud et al., 2014 ; Zheng et al., 2013). A survey in Scotland showed that, at death, only 20% of non-cancer patients had been formally referred for palliative care compared with 75% of cancer patients (Zheng et al., 2013). Although Taiwan is the highest-ranked Asian country on the 2015 Quality of Death Index, the percentage of non-cancer patients receiving palliative care service in Taiwan falls below the 20% noted in the Scotland survey.
CONTEXT: Cancer-related pain is associated with significant suffering and is one of the most challenging symptoms to manage. Studies indicate that front-line clinicians often lack the knowledge on best practices in cancer pain management.
OBJECTIVES: The current project, a quality improvement (QI) initiative, evaluated the outcome of an online educational intervention for nurses on complex cancer pain management.
METHODS: An online 7-module educational intervention, Advanced Pain Assessment and Management, was offered from 2012 to 2017. Pre-post course evaluations included self-reported knowledge and confidence across cancer pain management domains. In-course competency assessments included knowledge examination, online discussion forum participation, opioid dosage calculation assignment, and small-group-based case study. A mixed-model statistical analysis was used to assess pre-post course change in pain management confidence level.
RESULTS: In all, 306 nurses from 89 hospitals in Ontario, Canada, were enrolled in the course; 81.4% returned the precourse survey and 71.9% successfully completed the course. The average confidence level on pain management was low at baseline (57.5%) but improved significantly post-course. In-course competency assessments ranged from 81% to 89%. Mixed-model results showed post-course improvements in confidence levels, independent of sociodemographic background, clinical role, and professional educational level. Nurses with longer years of practice and more cancer cases reported greater confidence.
CONCLUSION: A facilitator-led online educational intervention focusing on complex cancer pain management can significantly improve nurses' knowledge, confidence, and skills. Low baseline knowledge among nurses highlights the pressing need for health-care organizations to implement cancer pain management training as an integral part of health-care QI initiative.
RESEARCH QUESTION: How does the process of engagement and integration of sources of information outside patient-physician interaction affect how individuals with cancer interpret their treatment experience and prognosis?
BACKGROUND: Studies of patient-physician communication of prognosis in oncology highlight areas where misunderstanding occurs: understanding consequences of treatment, likelihood of treatment success, probability of cure, status/progression of illness, and prognosis. Theories proposing mechanisms that underlie this discrepancy cannot account for all instances of misunderstanding, including when complete and direct physician disclosure occurs. Prior research focused on patient-physician communication event(s) and immediate antecedents and consequences. However, less is known about what happens to information once it has been communicated and how a patient's process to interpret the meaning of their experience affects their understanding of it. Our study explores this question by examining patient communication with sources of information other than treating physicians.
METHODOLOGY: We conducted 10 semi-structured qualitative interviews with individuals diagnosed with 4 types of cancer at different stages. The interviews were analyzed using inductive qualitative analysis.
RESULTS: Participants in our sample consulted a variety of additional sources to give context and understanding to their communicated prognosis. These were important contributors to how they understood their prognosis and incorporated that understanding. They included family, friends/acquaintances, cancer survivors, support/survivor groups, secondary health-care staff, and relevant informational materials. Different motivations for seeking out these sources were also expressed. Participants expressed a link between their understanding of their prognosis and the variety of outside sources they enlisted for input and support.
BACKGROUND: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.
OBJECTIVE: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.
METHODS:: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.
RESULTS: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity.
CONCLUSIONS: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
Cancer pain is an unrelenting symptom with the potential to alter the quality of life of patients. To adequately manage pain, nurses caring for cancer patients need to fully understand each patient's pain experience. The purpose of this study was to identify the intensity, distress, frequency, or constancy of pain in patients treated for cancer or cancer symptoms and to better understand patient barriers to pain management. This cross-sectional study included patients (N = 105) treated for cancer or cancer symptoms at 2 outpatient medical centers. Assessments included the Pain Barriers Scale, the Cancer Symptom Scale, and the Multidimensional QOL Scale–Cancer. Descriptive statistics and Spearman correlations were used to analyze the data. Sixty-nine percent of patients reported present pain of moderate to severe intensity that caused distress, was frequent/constant, or interfered with their lives. Patients with the greatest pain distress reported the greatest intensity of pain (r = 0.77) and the greatest interference (r = 0.78) with daily lives. Cancer pain was associated with significant distress and interference with life activities and occurred frequently or constantly for many study patients.
Background.: Financial distress (FD) is common among patients with advanced cancer. Our purpose was to compare the frequency and intensity of FD and its associations with symptom distress and quality of life (QOL) in these patients in France and the U.S.
Materials and Methods: In this secondary analysis of two cross-sectional studies, we assessed data on 292 patients who received cancer care at a public hospital or a comprehensive cancer center in France (143 patients) or the U.S. (149 patients). Outpatients and hospitalized patients over 18 years of age with advanced lung or breast or colorectal or prostate cancer were included. Diagnosed cognitive disorder was considered a noninclusion criterion. Advanced cancer included relapse or metastasis or locally advanced cancer or at least a second-line chemotherapy regimen. Patients self-rated FD and assessed symptoms, psychosocial distress, and QOL on validated questionnaires.
Results: The average patient age was 59 years, and 144 (49%) were female. FD and high intensity were reported more frequently in U.S. patients than in French (respectively 129 [88%] vs. 74 [52%], p < .001; 100 [98%] vs. 48 [34%], p < .001,). QOL was rated higher by the U.S. patients than by the French (69 [SD, 18] vs. 63 [SD, 18], p = .003). French patients had more psychological symptoms such as anxiety (8 [SD, 4] vs. 6 [SD, 5], p = .008). Associations were found between FD and U.S. residence, FD and single status (0.907, p = .023), and FD and metastasis (1.538, p = .036). In contrast, negative associations were found between FD and older age (-0.052, p = .003) and FD and France residence (-3.376, p = .001).
Conclusion: Regardless of health care system, FD is frequent in patients with advanced cancer. U.S. patients were more likely to have FD than French patients but reported better QOL. Further research should focus on factors contributing to FD and opportunities for remediation.
This perspective review considers analytic features of the design of a longitudinal trial regarding antimicrobial therapy in older terminal cancer patients receiving palliative care. We first overview antimicrobial use at the end of life; both the potential hazards and benefits. Antimicrobial prescribing should consider both initiation as well as cessation of medications when analyzing the burden of medications. Approaches to decision making regarding antimicrobial use are presented and the importance of health literacy in these decision processes. We next present aspects of both feasibility and comparative trial design with a health literacy intervention to reduce antimicrobial use in older terminal cancer patients receiving palliative care. Considerations to clustered randomization and given that infections can reoccur over a trial period, we share suggestions of longitudinal modeling of clustered randomized trial data.
This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse’s Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family’s dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (a of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.
BACKGROUND: Palliative care programs in the United States are becoming more integrated with oncology outpatient practices.
OBJECTIVES: This article offers a condensed review of available literature on the usefulness of palliative care in the oncology clinic setting and a case study to illustrate these ideas.
METHODS: Literature was reviewed related to the successes and failures of providing an embedded palliative care team in an oncology clinic and its role and effectiveness as part of a collaborative interprofessional team for patients with cancer.
FINDINGS: The incorporation of palliative care into outpatient oncology clinics presented a reduction in symptom burden, financial burden, and emergency department visits for symptom management. Palliative care also facilitates increased communication between patients and providers to ensure that care meets patients' wishes.
BACKGROUND: The integration of palliative care into standard oncology care is supported by research to improve quality of life and symptom distress in patients with advanced cancer. In 2016, the American Society of Clinical Oncology (ASCO) released practice guidelines for oncology palliative care that emphasized interprofessional assessment and management of this patient population.
OBJECTIVES: The purpose of this study was to evaluate the effect of clinical guidelines on symptom distress in patients with advanced cancer.
METHODS: In two oncology palliative care clinics, the Edmonton Symptom Assessment Scale (ESAS) scores for pain, fatigue, and anxiety were measured prior to consultation (T1) and at two subsequent visits (T2 and T3). A standardized documentation template was used to measure fidelity for key guideline components.
FINDINGS: Pain, fatigue, and anxiety ESAS scores were statistically lower from T1 to T3. The frequency of patients having a decrease of 2 or more points for all symptoms increased compared to baseline data. There was 100% compliance to the documentation template during the guideline implementation.
OBJECTIVE: This observational study explores the association between palliative care (PC) involvement and high-cost imaging utilisation for patients with cancer patients during the last 3 months of life.
METHODS: Adult patients with cancer who died between 1 January 2012 and 31 May 2015 were identified. Referral to PC, intensity of PC service use, and non-emergent oncological imaging utilisation were determined. Associations between PC utilisation and proportion of patients imaged and mean number of studies per patient (mean imaging intensity (MII)) were assessed for the last 3 months and the last month of life. Similar analyses were performed for randomly matched case-control pairs (n = 197). Finally, the association between intensity of PC involvement and imaging utilisation was assessed.
RESULTS: 3784 patients were included, with 3523 (93%) never referred to PC and 261 (7%) seen by PC, largely before the last month of life (61%). Similar proportions of patients with and without PC referral were imaged during the last 3 months, while a greater proportion of patients with PC referral were imaged in the last month of life. PC involvement was not associated with significantly different MII during either time frame. In the matched-pairs analysis, a greater proportion of patients previously referred to PC received imaging in the period between the first PC encounter and death, and in the last month of life. MII remained similar between PC and non-PC groups. Finally, intensity of PC services was similar for imaged and non-imaged patients in the final 3 months and 1 month of life. During these time periods, increased PC intensity was not associated with decreased MII.
CONCLUSIONS: PC involvement in end-of-life oncological care was not associated with decreased use of non-emergent, high-cost imaging. The role of advanced imaging in the PC setting requires further investigation.
Background: Access to palliative care has been associated with improving quality of life and reducing the use of potentially aggressive end-of-life care. However, many challenges and barriers exist in providing palliative care to residents in northern and rural settings in Ontario, Canada.
Aim: The purpose of this study was to examine access to palliative care and associations with the use of end-of-life care in a decedent cohort of northern and southern, rural and urban, residents.
Design: Using linked administrative databases, residents were classified into geographic and rural categories. Regression methods were used to define use and associations of palliative and end-of-life care and death in acute care hospital.
Setting/Participants: A decedent cancer cohort of Ontario residents (2007-2012).
Results: Northern rural residents were less likely to receive palliative care (adjusted odds ratio [OR] = 0.90, 95% confidence interval [CI]: 0.83-0.97). Those not receiving palliative care were more likely to receive potentially aggressive end-of-life care and die in an acute care hospital (adjusted OR = 1.20, 95% CI: 1.02-1.41).
Conclusions: Palliative care was significantly associated with reduced use of aggressive end-of-life care; however, disparities exist in rural locations, especially those in the north. Higher usage of emergency department (ED) and hospital resources at end of life in rural locations also reflects differing roles of rural community hospitals compared with urban hospitals. Improving access to palliative care in rural and northern locations is an important care issue and may reduce use of potentially aggressive end-of-life care.
PURPOSE: Family communication is a known protective factor for minor children's psychological health following the death of a parent, but there is little research describing communication within such families specifically from the perspective of the children. The purpose of this study was therefore to explore communication in parentally bereaved families from the perspective of the children and surviving parent.
METHODS: Interviews with four parents and four children from four families were analyzed using inductive content analysis. Interviews took place in the family's home or at the research center based on the family's wishes 4-14 months after a parent had died. Interviews had an open approach and were based on an interview guide. Each interview was between 60 and 120 min long.
RESULTS: Four categories emerged which were related to family members' experiences of family communication while adjusting to their new circumstances as bereaved: the importance of open and honest communication in the family; new challenges in the family which affect communication; communicating the need for help; and talking about and remembering the deceased parent.
CONCLUSIONS: This study illuminates the connection between family communication and adjustments to new circumstances following the death of a parent. The results suggest that the relationship between family adjustment and communication may be circular whereby the family's ability to adjust to their new circumstances is affected by how the family communicates. Similarly, family communication may be affected by the family's coping strategies and ability to adjust to their new circumstances.
Objective: Adolescent and young adults' (AYAs) involvement in advance care planning and end-of-life discussions may enhance the decision-making process, reduce stress and improve the patient's quality of life. Given the importance of establishing adequate communication and having culturally-appropriate tools to introduce advance care planning, our paper will describe the cross-cultural adaptation of the advance care planning guide, Voicing My CHOiCES™ in Australia and in Brazil.
Methods: In Brazil, the process involved initially translating the document to Portuguese followed by evaluation by a group of providers and patients (aged 18-39) undergoing cancer treatment. The document was revised based on the feedback received, then back-translated to English and discussed with Voicing My CHOiCES™ 'authors to refine the final version in Portuguese. In Australia, a multi-perspective interview-based study was undertaken with AYA cancer patients/survivors (aged 15-25), siblings, parents, and a range of healthcare providers from the oncology setting, to determine the perceived acceptability of the tool within the Australian clinical context.
Results: These interviews pointed to a variety of recommended adaptations ranging from the aesthetic and linguistic, through to the re-structuring of content within the tool. Adaptations for the Australian setting were then revised in an iterative capacity within several focus groups of AYA participants and healthcare providers.
Conclusions: The processes used in both countries highlight ways to engage youth living with a life-limiting illness in conversations about advance care planning and how to develop culturally-appropriate clinical tools.
Hospitals play an important role in the care of patients with advanced cancer: nearly half of all cancer deaths occur in acute-care settings. The need for increasing access to palliative care and related support services for patients with cancer in acute-care hospitals is therefore growing. Here, we examine how often and how early in their illness patients with cancer might be receiving palliative care services in the 2 years before their death in an acute-care hospital in Canada. The palliative care code from inpatient administrative databases was used as a proxy for receiving, or being referred for, palliative care. Currently, the palliative care code is the only data element routinely collected from patient charts that allows for the tracking of palliative care activity at a pan-Canadian level. Our findings suggest that most patients with cancer who die in an acute-care hospital receive a palliative designation; however, many of those patients are identified as palliative only in their final admission before death. Of the patients who received a palliative designation before their final admission, nearly half were identified as palliative less than 2 months before death. Findings signal that delivery of services within and between jurisdictions is not consistent, that the palliative care needs of some patients are being missed by physicians, and that palliative care is still largely seen as end-of-life care and is not recognized as an integral component of cancer care. Measuring the provision of system-wide palliative care remains a challenge because comprehensive national data about palliative care are not currently reported from all sectors. To advance measurement and reporting of palliative care in Canada, attention should be focused on collecting comparable data from regional and provincial palliative care programs that individually capture data about palliative care delivery in all health care sectors.