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Purpose: Adolescents and young adults (AYA) with cancer require highly individualized, age-specific end-of-life care. This study identified the characteristics of AYA patients with cancer receiving home-based palliative care and explored their unique needs and challenges compared with other age groups. Methods: This retrospective cohort study analyzed the medical records of AYA patients with cancer to compare home-based palliative care characteristics with those of older age groups. The study included 81 AYA patients with cancer aged 16–39 years who had received home palliative care at a single institution from 2013 to 2023. They were compared with 5,017 patients with cancer aged 40 years and older. Patient background, duration of home end-of-life care, sedation, and association with social factors were examined retrospectively from medical records. Results: The median age of AYA patients with cancer was 34 years; 65.4% were female. The primary cancer sites were gastrointestinal (34.6%) and thoracic (23.5%), with 80.0% at Stage IV. The median home care duration was 28.5 days, shorter than that for older patients (40 days) (p < 0.0001). Home care rates were similar between AYA and older patients (82.4% vs. 79.9%, p = 0.16). Sedation was more common in the 30–39 age group than in the 16–29 group (33.3% vs. 6.3%, p = 0.049). Conclusion: AYA patients with cancer achieved a high rate of end-of-life care at home, although their duration of home care was shorter. The characteristics of home care varied depending on the primary site and age, highlighting the importance of creating highly individualized care plans. [ABSTRACT FROM AUTHOR]

Purpose: Palliative Care Outcomes Collaboration (PCOC) is an internationally recognized program developed in Australia. Taiwan became the first country in Asia to implement PCOC in 2020. There is little research on the impact of PCOC in Asia. We sought to examine the effects of the Taiwan PCOC on palliative outcomes. Methods: The study analyzed the impact of PCOC with a retrospective cohort design. The hypotheses were that PCOC could improve end-of-life care quality and reduce non-beneficial treatments. The study enrolled patients with terminal illnesses from the inpatient palliative care units. General characteristics of participants were collected. Exclusion criteria were people without a diagnosis of terminal illness, aged 20 and younger, or with missing data. Results: The study collected 1,121 patients, 555 in the PCOC comparison group and 566 in the intervention group. Most patients were with terminal cancer (88.58%). The rates of hospital deaths in the PCOC and non-PCOC groups were 68.73% vs. 74.95% (P = 0.021). A multivariable logistic regression model, adjusting for age, sex, Charlson comorbidity index, and terminal cancer status, was utilized. The PCOC intervention significantly decreased hospital deaths (OR = 0.26, 95%CI 0. 16–0.41, P < 0.001). Conclusions: PCOC in Taiwan significantly reduced hospital deaths among terminal patients, possibly due to effective symptom management and improved communication via the use of patient-reported outcomes. Further research is needed to support PCOC implementation in Asia and investigate collaboration programs' impact on end-of-life care quality and non-beneficial treatments. [ABSTRACT FROM AUTHOR]

Purpose: Health service use is most intensive in the final year of a person’s life, with 80% of this expenditure occurring in hospital. Close involvement of primary care services has been promoted to enhance quality end-of-life care that is appropriate to the needs of patients. However, the relationship between primary care involvement and patients’ use of hospital care is not well described. This study aims to examine primary care use in the last year of life for cancer patients and its relationship to hospital usage. Methods: Retrospective cohort study in Victoria, Australia, using linked routine care data from primary care, hospital and death certificates. Patients were included who died related to cancer between 2008 and 2017. Results: A total of 758 patients were included, of whom 88% (n = 667) visited primary care during the last 6 months (median 9.1 consultations). In the last month of life, 45% of patients were prescribed opioids, and 3% had imaging requested. Patients who received home visits (13%) or anticipatory medications (15%) had less than half the median bed days in the last 3 months (4 vs 9 days, p < 0.001, 5 vs 10 days, p = 0.001) and 1 month of life (0 vs 2 days, p = 0.002, 0 vs 3 days, p < 0.001), and reduced emergency department presentations (32% vs 46%, p = 0.006, 31% vs 47% p < 0.001) in the final month. Conclusion: This study identifies two important primary care processes—home visits and anticipatory medication—associated with reduced hospital usage and intervention at the end of life. [ABSTRACT FROM AUTHOR]

Purpose: It is important for palliative care providers to identify what factors are associated with a "good death" for patients with advanced cancer. We aimed to identify factors associated with a "good death" evaluated by the Good Death Scale (GDS) score among inpatients with advanced cancer in palliative care units (PCUs) in Japan. Methods: The study is a sub-analysis of a multicenter prospective cohort study conducted in Japan. All variables were recorded on a structured data collecting sheet designed for the study. We classified each patient into better GDS group or worse GDS group, and examined factors associated with better GDS using multivariate analysis. Results: Between January and December 2017, 1896 patients were enrolled across 22 PCUs in Japan. Among them, a total of 1157 patients were evaluated. Five variables were significantly associated with a better GDS score in multivariate analysis: preferred place of death at PCU (odds ratio [OR] 2.85; 95% confidence interval [CI] 1.72–4.71; p < 0.01), longer survival time (OR 1.02; 95% CI 1.00–1.03; p < 0.01), not sudden death (OR 1.96; 95% CI 1.27–3.04; p < 0.01), better spiritual well-being in the last 3 days in life (OR 0.53; 95% CI 0.42–0.68; p < 0.01), and better communication between patient and family (OR 0.81; 95% CI 0.66–0.98; p = 0.03). Conclusions: We identified factors associated with a "good death" using GDS among advanced cancer patients in Japanese PCUs. Recognition of factors associated with GDS could help to improve the quality of end-of-life care. [ABSTRACT FROM AUTHOR]

Purpose: Adequate integration of palliative care in oncological care can improve the quality of life in patients with advanced cancer. Whether such integration affects the use of diagnostic procedures and medical interventions has not been studied extensively. We investigated the effect of the implementation of a standardized palliative care pathway in a hospital on the use of diagnostic procedures, anticancer treatment, and other medical interventions in patients with incurable cancer at the end of their life. Methods: In a pre- and post-intervention study, data were collected concerning adult patients with cancer who died between February 2014 and February 2015 (pre-PCP period) or between November 2015 and November 2016 (post-PCP period). We collected information on diagnostic procedures, anticancer treatments, and other medical interventions during the last 3 months of life. Results: We included 424 patients in the pre-PCP period and 426 in the post-PCP period. No differences in percentage of laboratory tests (85% vs 85%, p = 0.795) and radiological procedures (85% vs 82%, p = 0.246) were found between both groups. The percentage of patients who received anticancer treatment or other medical interventions was lower in the post-PCP period (40% vs 22%, p < 0.001; and 42% vs 29%, p < 0.001, respectively). Conclusions: Implementation of a PCP resulted in fewer medical interventions, including anticancer treatments, in the last 3 months of life. Implementation of the PCP may have created awareness among physicians of patients' impending death, thereby supporting caregivers and patients to make appropriate decisions about medical treatment at the end of life. Trial registration number: Netherlands Trial Register; clinical trial number: NL 4400 (NTR4597); date registrated: 2014–04-27. [ABSTRACT FROM AUTHOR]

Purpose: About half of Danish patients dying from cancer have never been in contact with specialized palliative care. Non-specialized palliative care in Denmark, i.e., somatic hospital departments, community nurses, and general practitioners, has rarely been described or evaluated. We aim to assess how non-specialized palliative care was evaluated by bereaved spouses, and to test whether distress when completing the questionnaire and ratings of aspects of end-of-life care was associated with satisfaction with place of death and overall quality of end-of-life care. Methods: Bereaved spouses of 792 cancer patients who had received non-specialized palliative care were invited to answer the Views of Informal Carers–Evaluation of Services–Short Form (VOICES-SF) and the Hospital Anxiety and Depression Scale (HADS) 3–9 months after the patient's death. Results: A total of 280 (36%) of invited spouses participated. In the last 3 months of the patient's life, the quality of all services taken together was rated as good, excellent, or outstanding in 70% of the cases. Satisfaction was associated with respondent's current distress (p = 0.0004). Eighty percent of bereaved spouses believed that the patient had died in the right place. Satisfaction with place of death was associated with place of death (p = 0.012) and the respondent's current distress (p = 0.0016). Conclusion: Satisfaction with place of death and overall quality of services was generally high but was rated lower by spouses reporting higher levels of distress when completing the questionnaire. Distress should be taken into account whenever services are evaluated by bereaved relatives. [ABSTRACT FROM AUTHOR]

Purpose: To analyze the interplay of sex and presence of children in unmarried patients with non-small cell lung cancer, because previous studies suggested sex-related disparities. Adult children may participate in treatment decisions and provision of social support or home care.Methods: Retrospective single-institution analysis of 186 unmarried deceased patients, managed according to national guidelines outside of clinical trials. Due to the absence of other oncology care providers in the region and the availability of electronic health records, all aspects of longitudinal care were captured.Results: Eighty-eight female and 98 male patients were included, the majority of whom had children. Comparable proportions in all four strata did not receive active therapy. Involvement of the palliative care team was similar, too. Patients without children were more likely to receive systemic therapy (39% utilization in women with children, 67% in women without children, 41% in men with children, 52% in men without children; p = 0.05). During the last 3 months of life, female patients spent significantly more days in hospital than their male counterparts. Place of death was not significantly different. Home death was equally uncommon in each group. In the multivariate analysis, survival was associated with age and cancer stage, in contrast to sex and presence of children.Conclusion: In contrast to studies from other healthcare systems, unmarried male patients were managed in a largely similar fashion to their female counterparts and with similar survival outcome. Unexpectedly, patients without children more often received systemic anti-cancer treatment. [ABSTRACT FROM AUTHOR]

Purpose: To compare health care experiences of patients with cancer or non-cancer diseases in their last year of life.Methods: A cross-sectional post-bereavement survey was conducted using an adapted German version of the VOICES questionnaire (VOICES-LYOL-Cologne). Differences in the reported experiences were assessed using a two-sided Pearson's chi-square test and Mann-Whitney U test.Results: We collected data from 351 bereaved relatives. More than half of non-cancer patients were not informed that their disease could lead to death (p < 0.001). When this was communicated, in 46.7% of non-cancer and 64.5% of cancer patients, it was reported by the hospital doctor (p = 0.050). In all, 66.9% of non-cancer and 41.6% of cancer patients were not informed about death being imminent (p < 0.001). On average, non-cancer patients had significantly fewer transitions and hospital stays in their last year of life (p = 0.014; p = 0.008, respectively). Non-cancer patients were treated more often by general practitioners, and cancer patients were treated more often by specialists (p = 0.002; p = 0.002, respectively). A substantially lower proportion of non-cancer patients were treated by at least one member of or in the setting of general or specialized palliative care (p < 0.001).Conclusions: Non-cancer patients experience disadvantages in communication regarding their care and in access to specialized palliative care in their last year of life compared to cancer patients. Regarding the assessment of palliative care needs and the lack of communication of an incurable disease, non-cancer patients are underserved. An early identification of patients requiring palliative care is a major public health concern and should be addressed irrespective of diagnosis.Trial Registration: Prospectively registered by the German Clinical Trials Register (DRKS00011925, data of registration: 13.06.2017). [ABSTRACT FROM AUTHOR]

Background: Few studies have developed an easy scoring system for the short-term survival of patients with gastrointestinal (GI) malignancy. Methods: A total of 816 terminally ill patients with GI malignancy were admitted to our palliative care unit. They were randomly divided into the investigation (n = 490) and validation (n = 326) groups. A total of 19 laboratory blood parameters were analyzed. Receiver-operating characteristic analysis was performed for each blood factor, and the area under the curve was calculated to determine the predictive value for 14-day survival after the blood test. Multivariable logistic regression analysis was performed to identify significant independent prognostic factors for 14-day mortality. To develop a scoring system for 14-day mortality, the laboratory prognostic score for gastrointestinal malignancy (GI-LPS) was calculated using the sum of indices of the independent prognostic factors. Results: Multivariable analysis showed that 5 of 19 indices, namely total bilirubin ≥ 2.1 mg/dL, blood urea nitrogen ≥ 28 mg/dL, eosinophil percentage ≤ 0.5%, neutrophil-to-lymphocyte ratio ≥ 9.2, and platelet count ≤ 194 × 103/μL, were significant independent factors of 14-day survival. GI-LPS showed acceptable accuracy for 14-day mortality in the investigation and validation groups. GI-LPS 3 (including any three factors) predicted death within 14 days, with a sensitivity of 56–58%, a specificity of 82–87%, a positive predictive value of 48–50%, and a negative predictive value of 87–90%. Conclusions: GI-LPS showed an acceptable ability to predict 14-day survival and can provide additional information to conventional prognostic scores. [ABSTRACT FROM AUTHOR]

Purpose: This study seeks to adapt a guideline for end-of-life care in patients with cancer to be used by healthcare teams. Methods: This methodological study was conducted by modifying the ADAPTE process and adding to it a qualitative study and consensus ratings by a multidisciplinary panel of experts. A qualitative study was thus performed to identify the end-of-life needs of patients with cancer. Then, the source guidelines and the results of the qualitative study were used to draft the initial version of the guideline, with 85 adaptation recommendations. A multidisciplinary panel of healthcare experts performed the external review of the recommendations based on the four criteria of relatedness, comprehensibility, usefulness, and feasibility and scored them on a scale of 1–9. The mean score of each recommendation was calculated, and the recommendations were classified into three categories: appropriate (mean score of 7–9), uncertain (mean score of 4–6.99), and inappropriate (mean score of 1–3.99). Results: All the recommendations were approved, as they all had a mean score of 7 or higher, and were then categorized into 11 dimensions: communication management; participatory and evidence-based decision-making management; pain management; dyspnea management; nausea and vomiting management; anorexia and cachexia management; constipation management; death rattle management; management of delirium, anxiety, and restlessness; hydration management; and pharmacological considerations. Conclusion: The adaptation of the guideline for end-of-life care in patients with cancer in Iran was performed by modifying the ADAPTE process with the participation of multidisciplinary stakeholders and based on the local needs. [ABSTRACT FROM AUTHOR]

Purpose: We investigated relationships between domains of quality of dying and death in patients with advanced cancer and their caregivers' bereavement outcomes and the moderating effect of patient age at death. Methods: Bereaved caregivers of deceased patients with advanced cancer who had participated in an early palliative care trial completed measures of grief (Texas Revised Inventory of Grief [TRIG]), complicated grief (Prolonged Grief Inventory [PG-13]), and depression (Center for Epidemiologic Studies-Depression [CESD-10]). They also completed the Quality of Dying and Death measure (QODD), which assesses patients' symptom control, preparation for death, connectedness with loved ones, and sense of peace with death. Results: A total of 157 bereaved caregivers completed the study. When patient age × QODD subscale interactions were included, greater death preparation was related to less grief at patient death (past TRIG: β = −.25, p =.04), less current grief (present TRIG: β = −.26, p =.03), less complicated grief (PG-13: β = −.37, p =.001), and less depression (CESD-10: β = −.35, p =.005). Greater symptom control was related to less current grief (present TRIG: β = −.27, p =.02), less complicated grief (PG-13: β = −.24, p =.03), and less depression (CESD-10: β = −.29, p =.01). Significant patient age × connectedness interaction effects for current grief (present TRIG: β =.30, p =.02) and complicated grief (PG-13: β =.29, p =.007) indicated that, with less connectedness, younger patient age at death was associated with greater caregiver grief. Conclusion: Better end-of-life death preparation and symptom control for patients with cancer may attenuate later caregiver grief and depression. Less connectedness between younger patients and their families may adversely affect caregiver grief. [ABSTRACT FROM AUTHOR]

Purpose: At the end of life, patients and their families tend to favor adequate pain and symptom management and attention to comfort measures over prolongation of life. However, it has been suggested that many cancer patients without curative options still receive aggressive treatment. We therefore aimed to describe the number of diagnostic procedures, hospitalization, and medication use among these patients as well as factors associated with receiving such care. Methods: We conducted a cohort study on all patients with metastasized cancer from a primary colon or bronchus and lung (BL) neoplasm from the moment of first admittance (January–December 2017) to end of follow-up (November 2018) or death. Results: A total of 408 patients with colon (36%) or BL (64%) cancer were included in this study, with a median survival time of 7.4 months. 93% of the patients were subjected to at least one diagnostic procedure, 49% received chemotherapy, and 56% received expensive medication including immunotherapy. Patients had a median of 4.6 hospital admissions and 2.3 emergency room (ER) visits. A quarter of all patients (n = 105) received specialized palliative care with a mean of 1.96 consultations and the first consultation after a median time of 4.1 months. Patients with BL neoplasms received significantly more diagnostic procedures, chemotherapy episodes, ER/ICU admissions, and more often received an end-of-life statement per person-year than patients with a primary colon neoplasm. Females received significantly less diagnostic procedures and visited the ER/ICU less frequently than males, and patients aged > 70 years received significantly less chemotherapy (episodes) and expensive medication than younger patients. No differences in care were found between different socioeconomic status groups. Conclusion: Patients with metastasized colon or BL cancer receive a large amount of in-hospital medical care. Specialized palliative care was initiated relatively late despite the incurable disease status of all patients. Factors associated with more procedures were BL neoplasms, age between 50 and 70, and male gender. [ABSTRACT FROM AUTHOR]

Purpose: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia.Methods: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey.Results: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region.Conclusion: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person. [ABSTRACT FROM AUTHOR]

Purpose: To (1) examine the communication difficulties nurses experience when providing end-of-life (EOL) care, (2) establish the correlation between communication difficulties across various stakeholders and (3) determine the impact sociodemographic factors has on the communication difficulties experienced. Methods: 124/178 (69.7%) nurses from oncology wards of a tertiary hospital were recruited. Sociodemographic survey and three validated subscales: Communication with Patient and Family (CPF), Explanation to Family (EF) and Reassessment of Current Treatment and Nursing Care (RCTNC) were used to collect the data. Data were analysed with Independent Samples T test, One-Way Analysis of Variance and Pearson's correlation coefficient. Results: Mean score was highest for CPF (8.75 ± 2.24) and lowest for RCTNC (6.32 ± 2.26). Positive correlations were found between CPF with EF (r = 0.613, p < 0.001), CPF with RCTNC (r = 0.243, p = 0.007) and EF with RCTNC (r = 0.370, p < 0.001). Age (p = 0.048), years of experience (p = 0.001), religion (p = 0.034) and EOL care training received (p = 0.040) were significant factors for CPF subscale while age (p = 0.011), years of experience (p = 0.001), educational qualification (p = 0.003) and EOL care training received (p = 0.026) were the significant factors for EF subscale. Conclusion: Nurses experienced more communication difficulties with patients and families than with the healthcare team. When nurses experience communication difficulties with the healthcare team, they also tend to experience communication difficulties with patients and families and when providing explanations to families. Nurses experienced greater communication difficulties when they are younger, are non-graduates, have less years of experience, adopted a religion or did not receive training in EOL care. Trial registration: Clinical Trials.gov Identifier: 2019/00680 (Domain Specific Review Board) [ABSTRACT FROM AUTHOR]

Introduction: The ability of oncologists to understand patients' goals of care is recognized as a key component of quality care. The purpose of this study is to examine the influence of patient–oncologist agreement regarding goals of care upon aggressive care at end of life (EOL) for patients with advanced cancer. Methods: Patients with advanced cancer and their oncologists were interviewed at study enrollment and every 3 months thereafter until patient death or end of the study period (15 months). A 100-point visual analogue scale was used to represent goals of care, with quality of life (scored as 0) and survival (scored as 100) as anchors. Strong goal of care agreement for survival was defined as oncologist and patient dyadic goal of care scores that fell between 70 and 100 (100 = highest goal for survival) and for comfort, dyadic goal of care values that fell between 0 and 30 (0 = high goal for comfort). Results: Two hundred and six patients and eleven oncologists provided data. At the last interview prior to death, 23.3% of dyads had strong goal of care agreement for either survival (8.3%) or comfort (15%) and 76.7% had no strong agreement. There was a significant association between aggressive care use and categories of dyadic agreement regarding goals of care (p = 0.024, Cramer's V = 0.15). Conclusions: A large percentage of oncologists did not understand their patients' EOL goals of care. While aggressive care aligned with categories of dyadic agreement for goals of care, high rates of aggressive care were reported. [ABSTRACT FROM AUTHOR]

Introduction: Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end-of-life conversations.Methods: Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared.Results: Six hundred fifty-four patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1-10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1-10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation.Conclusion: Care for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services. [ABSTRACT FROM AUTHOR]

Purpose: Although rates of hospice use have increased over time, insurance plan- and racial/ethnic-based disparities in rates have been reported in the USA. We hypothesized that increased rates of hospice use would reduce or eliminate insurance plan-based disparities and that racial/ethnic disparities would be eliminated in managed care (MC) insurance plans.Methods: We studied the use of hospice care in the final 30 days of life among 40,184 elderly Texas Medicare beneficiaries who died from primary breast, colorectal, lung, pancreas, or prostate cancer between January 1, 2007 and December 31, 2013, using statewide Medicare claims linked to cancer registry data. Rates of hospice use were computed by race/ethnicity and insurance plan (MC or fee-for-service (FFS)). We used logistic regression to account for the impact of confounding factors.Results: Rates of hospice use increased significantly over time, from 68.9% in 2007 to 76.1% in 2013. By 2013, differences in hospice use rates between MC and FFS plans had been reduced from 10% to < 5%. However, after accounting for insurance plan and confounding factors, racial/ethnic minority beneficiaries' hospice use was significantly lower than non-Hispanic white beneficiaries' (p < 0.0001). This disparity was observed among both FFS and MC beneficiaries.Conclusions: Hospice use in the final 30 days of life has increased among elderly cancer patients in Texas, virtually eliminating the difference between FFS and MC insurance plans. Despite these positive trends, racial/ethnic-based disparities persist. These disparities are not explained by confounding factors. Future research should address social and behavioral influences on end-of-life decisions. [ABSTRACT FROM AUTHOR]

Purpose: Little has been determined regarding the association between patients' and families' illness understanding and preferences for medical care. We aimed to evaluate the association of illness understanding with advance care planning (ACP) and preferences for end-of-life care, such as aggressive care, early palliative care (EPC), and hospice care, among advanced cancer patients and their family caregivers.Methods: Patients were recruited for a prospective cohort study at outpatient and inpatient facilities in nine university hospitals in Korea (n = 150), and their primary family caregivers were also asked to participate (n = 101). Data on ACP and end-of-life care preferences were collected only at baseline in the cohort study with optional questions and were used to analyze these study results.Results: Patients with illness understanding were more likely to have documented physician orders for life-sustaining treatment (POLSTs) (adjusted odds ratio [aOR] of 4.94) and to have discussed ACP with their families (aOR 2.15) than those who did not. Being expected to live for several months, they were unlikely to prefer active treatment. Caregivers understanding patients' illness were more likely to write advance directives (ADs) and to discuss ACP; furthermore, they had already discussed ACP with family members. They did not prefer active treatment or life-sustaining treatments when their family members were expected to die within a few weeks. There was no significant association between illness understanding and preferences for EPC.Conclusion: Accurately recognizing an incurable disease is associated with preferences for more ACP and less aggressive care but not with preferences for EPC or hospice care among both advanced cancer patients and their family caregivers. [ABSTRACT FROM AUTHOR]

Background: Advanced cancer patients' end-of-life care preferences in oncology units, medical-surgical units, nursing homes and palliative care services have been established. However, less is known about end-of-life care preferences of patients with advanced cancer in intensive care units and their families.Aim: To explore end-of-life care preferences of patients with advanced cancer and their families in intensive care units and if these align with essential elements for end-of-life care.Design: Electronic databases were searched up to February 2018. Reference lists of retrieved articles were screened for potential studies.Results: A total of 112 full text articles were retrieved. Of these, 12 articles reporting outcomes from 10 studies were eligible for inclusion. The majority were retrospective chart reviews (n = 7) and conducted in developed countries (n = 9). Care preferences change over time with deteriorating physical condition. Ongoing patient-centred communication and shared decision-making are critical as is teamwork and involvement of a palliative care team. Marital status, gender and ethnicity appear to influence care preferences. Of those studies examining patient preferences and/or the receiving of their preferences, these could be aligned with approximately half of the Australian essential elements for end-of-life care.Conclusions: Providing end-of-life care for patients with advanced cancer in intensive care units is challenging. No studies have investigated prospectively the end-of-life care preferences of patients and their families in this acute setting. Further research is required to determine the elements of care preferences for patients with advanced cancer and their families in intensive care units in developing countries. [ABSTRACT FROM AUTHOR]

Background: The death of a loved one has great impact on family members even when the death was expected. While negative changes are reported, some individuals also report personal growth, known as posttraumatic growth (PTG). Many studies on PTG have been performed using quantitative methods and suggest that PTG may differ according to the traumatic event and cultural background.Purpose: This study aimed to explore how Japanese bereaved family members of patients with cancer express their experience of PTG after the patient's death by analyzing open-ended answers provided in a cross-sectional survey.Methods: Qualitative data were collected through a survey, and thematic analysis was used to analyze the data. The present study was part of a larger cross-sectional survey of bereaved families of patients with cancer. Data analyzed in the current study were obtained from 162 bereaved family members of patients with cancer.Results: We identified 18 sub-themes within five predefined major domains of PTG. Moreover, we also identified two additional themes: changed view of life and death, and awareness of health management.Conclusions: The experience of PTG of bereaved family members varied considerably. Future research on PTG experiences among groups from diverse cultural backgrounds would be beneficial for understanding the concept and its clinical implications. [ABSTRACT FROM AUTHOR]

Objectives: To explore in a sample of medical oncology outpatients and their nominated support persons (SPs): (1) the relative influence of pain, consciousness and life extension on end-of-life choices using a discrete choice experiment (DCE); (2) the extent to which SPs can predict the choices of index patients and (3) whether having a previous end-of-life discussion was associated with dyad agreement.Methods: Adult medical oncology patients and their SPs were approached for consent to complete a survey containing a DCE. Participants chose between three unlabelled care scenarios characterised by three attributes: pain (mild, moderate or severe), consciousness (some, half or most of time) and extension of life (1, 2 or 3 weeks). Respondents selected (1) most-preferred and (2) least-preferred scenarios within each question. SPs answered the same questions but from patient's perspective.Results: A total of 110 patients and 64 SPs responded overall (42 matched patient-SP dyads). For patients, pain was the most influential predictor of most- and least-preferred scenarios (z = 12.5 and z = 12.9). For SPs, pain was the only significant predictor of most and least-preferred scenarios (z = 9.7 and z = 11.5). Dyad agreement was greater for choices about least- (69%) compared to most-preferred scenarios (55%). Agreement was slightly higher for dyads reporting a previous EOL discussion (68 versus 48%; p = 0.065).Conclusion: Patients and SPs place significant value on avoiding severe pain when making end-of-life choices, over and above level of consciousness or life extension. People's views about end-of-life scenarios they most as well as least prefer should be sought. [ABSTRACT FROM AUTHOR]

Background: The aim of this paper is to collect data on the practice of palliative care, withholding and withdrawal of life-sustaining therapies, and management of end of life (EOL) in Italian intensive care units (ICUs).Methods: Web-based survey among Italian anesthesiologists endorsed by the Italian Society of Anesthesiology Analgesia Reanimation and Intensive Care (SIAARTI). The survey consists of 27 close-ended and 2 open-ended questions.Results: Eight hundred and five persons responded to the full list of questions. The highest proportion of respondents was of 36-45 years of age (34%) and catholic (66%). Almost 70% of responders declared that palliative/supportive care are applied in their ICU in case of futility of intensive treatments. Decision on withdrawing/withholding of life-sustaining treatments resulted from team consensus in most cases (58%). In more than 70% of responders' ICUs, there is no collaboration with palliative/supportive care experts. Systematic recording of most frequent symptoms experienced by critically ill patients (e.g., pain, dyspnea, thirst) was not common. Vasopressors, extracorporeal therapies, blood component transfusions and invasive monitoring were the most commonly modified/interrupted measures in case of futility. Almost 85% of respondents have not received training in palliative/supportive care. The proportion of respondents whose institution has a palliative care team and who had training in palliative care was not homogenous across the country.Conclusions: These data suggest that training in palliative care and its clinical application should be implemented in Italy. Efforts should be made to improve and homogenize the management of dying patients in ICU. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study is to describe and compare the relation between treatment aims, hospitalizations, and hospital mortality for Dutch patients who died from lung, colorectal, breast, prostate, or pancreatic cancer.Methods: A mortality follow-back study was conducted within a sentinel network of Dutch general practitioners (GPs), who recorded the end-of-life care of 691 patients who died from one of the abovementioned cancer types between 2009 and 2015. Differences in care by type of cancer were analyzed using multilevel analyses to control for clustering within general practices.Results: Among all cancer types, patients with prostate cancer most often and patients with pancreatic cancer least often had a palliative treatment aim a month before death (95% resp. 84%). Prostate cancer patients were also least often admitted to hospital in the last month of life (18.5%) and least often died there (3.1%), whereas lung cancer patients were at the other end of the spectrum with 41.8% of them being admitted to hospital and 22.6% dying in hospital. Having a palliative treatment aim and being older were significantly associated with less hospital admissions, and having a palliative treatment aim, having prostate cancer, and dying in a more recent year were significantly associated with less hospital deaths.Conclusion: There is large variation between patients with different cancer types with regard to treatment aims, hospital admissions, and hospital deaths. The results highlight the need for early initiation of GP palliative care to support patients from all cancer types to stay at the place they prefer as long as possible. [ABSTRACT FROM AUTHOR]

Purpose: Palliative care (PC) involves many health care providers leading to a high complexity of structures that requires efficient coordination as provided by case management (CM). Our study aimed to evaluate the effects of CM newly implemented in a specialised palliative care unit by evaluating team members' tasks and time resources before (T0) and after implementation (T1). It was hypothesised that team members would be able to spend less time on organisational and administrative tasks and more time on patient care.Methods: A prospective pre-post study design was used. Time distribution of different tasks at T0 and T1 was compared between three different professional groups: physicians, nursing staff and social work. To document their tasks and time required, a documentation form with several items for each profession was developed. Data was analysed using t tests for independent samples.Results: After Bonferroni correction, a significant pre-post difference was found for the time spent on "discharge interview and discharge" as rated by the physicians (p < .001) with less time spent on this activity after CM implementation. The nursing staff had significantly more time for "conversations with patients" (p < .001) after CM implementation. Moreover, they spent significantly less time on "patient-related requests/advice by telephone" (p < .001) and "discussions with relatives/participation in family discussions" at post-assessment (p < .001). The social worker had significantly more time for "patient advice and support services" (p = .013) after CM implementation.Conclusions: Integrating CM can be time efficient and ensures team members to spend more time on their core tasks in patient care. [ABSTRACT FROM AUTHOR]

Purpose: Although previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden.Methods: Interviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis.Results: Participants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants' views of a good death.Conclusions: Healthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients' personal experience of death and dying can help address their fears as death approaches. [ABSTRACT FROM AUTHOR]

ᅟ: There is little evidence regarding primary healthcare team members' perceptions concerning palliative care consultation team (PCCT) and palliative care (PC) issues on their own wards.Purpose: This study aimed to study whether a PCCT can influence and change primary healthcare team members' perceptions regarding the palliative care at the end of life they are providing to patients in their own acute wards.Methods: The intervention was a PCCT visiting surgical and internal medicine wards in 1 year. We used a quasi-experimental design with pre-post-testing, measuring at baseline, and after 1 year's intervention. A questionnaire was answered by all primary healthcare team members in three acute wards.Results: A total of 252 team members (pre-post-intervention n = 132/n = 120) participated in the study. Overall, 11 of the 12 statements scored significantly higher after the intervention than before. Responses varied significantly between different professions and depending on the number of dying patients cared for during the last month. The five with the highest Wald values were as follows: the presence of a break point dialogue with a patient, where the changed aim and focus of care was discussed; early detection of impending death; adequate symptom relief and psychological and existential issues.Conclusion: It is possible to change perceptions about end-of-life care in primary healthcare team members on acute wards. Palliative care consultation teams should be a natural part wherever dying patients are cared for. [ABSTRACT FROM AUTHOR]

Purpose: There has been increased awareness recently of the unique medical and psychosocial needs of adolescents and young adults (AYAs) with cancer. However, the existing AYA literature is mainly focused on curative disease or survivorship rather than on advanced disease. Using qualitative methodology, we sought to understand the experience of younger adults with advanced cancer.Methods: Participants were interviewed using open-ended, discovery-oriented interviews. Data was analyzed using thematic analysis. In total, ten English-speaking advanced cancer patients who were being treated at a comprehensive cancer center in Canada, were interviewed. Participants were between the ages of 18 and 35, and seven of them were female.Results: The diagnosis of cancer was universally experienced as isolating and unexpected, with serious illness regarded as a problem of older individuals. The core challenge of living in the face of dying was felt to be constantly present yet typically unarticulated. Meaning-making tended to be constructed around future-oriented goals rather than upon the life that had been lived. Individuals felt forcefully removed from the stream of life, with a perceived interruption in the developmental tasks of establishing adult identity, becoming autonomous, and forming new relationships. All cited a need for young adult-specific services, yet none could describe specific services that would be beneficial. Many expressed reluctance to engage in individual psychotherapeutic treatment.Conclusions: Advanced cancer in younger adults was perceived by them as isolating and as interfering with age-appropriate developmental tasks. Creative and flexible psychosocial support programs are needed to engage this population with limited expected survival. [ABSTRACT FROM AUTHOR]

Purpose: Do-not-resuscitate (DNR) consent is crucial in end-of-life (EOL) care for patients with advanced cancer. However, DNR consents signed by patients (DNR-P) and surrogates (DNR-S) reflect differently on patient autonomy and awareness.Methods: This retrospective study enrolled advanced cancer patients treated at National Taiwan University Hospital, Hsin-Chu Branch between 2012 and 2014. Patients who signed DNR consent at other hospitals were excluded; the remaining patients were subsequently classified into DNR-S and DNR-P groups.Results: We enrolled 1495 patients. The most prevalent primary cancers were hepato-biliary-pancreatic (26.9 %), lung (16.3 %), and colorectal (14.0 %) cancers. We classified 965 (64.5 %) and 530 (35.5 %) patients into the DNR-S and DNR-P groups, respectively. Significant differences were observed between both groups regarding gender (p = 0.002), age (p < 0.001), and the Eastern Cooperative Oncology Group performance (p < 0.001) and educational (p < 0.001) status levels. The median survival times after DNR consent signature were 5.0 days (95 % confidence interval [CI] 4.4-5.6 days) and 14.0 days (95 % CI 12.1-15.9 days) in the DNR-S and DNR-P groups, respectively (p < 0.001). The median good death evaluation (GDE) scores were 5.4 (95 % CI 4.9-6.0) and 13.7 (95 % CI 12.7-14.6) in the DNR-S and DNR-P groups, respectively (p < 0.001). Univariate and multivariate analyses revealed that DNR-S was an independent factor for significantly low GDE scores (i.e., poor EOL care quality).Conclusion: The DNR concept is emerging; however, the DNR-P percentage remains low (35.6 %) in patients with advanced cancer. DNR-P significantly improves the EOL care quality. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study is to address the question "does early palliative care in addition to standard oncology care or late additional palliative care improve patterns of terminal care in patients who died from non-small cell lung cancer (NSCLC)?"Methods: We performed retrospective single-institution study of 286 patients. Palliative care was provided by a dedicated multidisciplinary palliative care team (PCT). An arbitrarily defined cutoff of 3 months before death was chosen to distinguish between early and late additional palliative care. Referral was at the discretion of the treating physicians who provided standard anticancer treatments.Results: Patients who received early (8 %) or late (27 %) additional palliative care were significantly younger than those who did not receive additional palliative care. The likelihood of active anticancer treatment in the last month of life was lowest in the early additional palliative care group, p = 0.03. Patients who received early or late additional palliative care were significantly less likely to lack a documented resuscitation preference, p = 0.0001. Patients who received early additional palliative care were significantly less likely to become hospitalized in the last 3 months of life, p = 0.003. Place of death was also numerically different, with hospital death occurring in 33 % of patients who received early additional palliative care, as compared to 48 % in the late and 50 % in the no PCT group, p = 0.35. Anticancer treatment intensity was not reduced if the PCT contributed to the overall management.Conclusion: Early additional palliative care resulted in relevant improvements. The optimal timing of this intervention should be examined prospectively. [ABSTRACT FROM AUTHOR]

Purpose: A randomized controlled trial of cancer patients has linked early supportive care with improved hospice use and less-aggressive end-of-life care. In practice, the early use of supportive interventions and potential impact on end-of-life care are poorly understood. We sought to describe early use of medications to treat common breast cancer symptoms (pain, insomnia, anxiety, and depression) and to assess the relationship between early use of these treatments and end-of-life care.Methods: Secondary analysis of 2006-2012 SEER-Medicare data was performed. Women included had stage IV breast cancer and died within the observation period. We used modified Poisson regression to assess the relationship between supportive medication use in the 90 days post-diagnosis and several end-of-life care measures (hospice use, in-hospital death, chemotherapy receipt within 14 days of death, ICU admission, or >1 hospitalization or emergency department/ED visit 30 days before death).Results: Among the 947 women included, 68 % of women used at least one supportive medication in the 90 days following their diagnosis: 60.3 % used opioid pain medications and 28.3 % received non-opioid psychotropic medications. Early use of any supportive medications was not associated with end-of-life care. Similarly, we found no differences in end-of-life care between opioid pain medication users and non-users. However, we found that non-opioid psychotropic medication users were less likely to receive chemotherapy in the last 14 days of life (aRR 0.33, 95 % CI 0.12-0.88).Conclusions: Non-opioid psychotropic use was associated with some aspects of end-of-life care. Future research should consider alternative measures of palliative and supportive care use using administrative data sources. [ABSTRACT FROM AUTHOR]

Purpose: Goals of care conversations have been suggested as a strategy for helping patients with advanced cancer manage the uncertainty and distress associated with end-of-life care. However, knowledge deficits about patient goals limit the utility of such conversations. We described the life and treatment goals of patients with incurable cancers, including goal values and expectancies. We examined the associations between paramount goals and patient prognosis, performance status, and psychological adjustment.Methods: Patients with advanced lung cancer, gastrointestinal cancer, or melanoma (N = 84) completed measures of prognosis for 12-month survival, hope, optimism, depression, and anxiety. Oncologists provided patient performance status and prognosis for 12-month survival. We conducted interviews with a subset of patients (N = 63), eliciting life and treatment goals, values, and expectancies.Results: Patient life goals resembled goals among healthy populations; whereas, treatment goals were perceived as separate and more important. Cure and fight cancer emerged as the most important goals. Patients who valued cure the most had worse performance status (M = 1.46 vs. 0.78) and more depressive symptoms (M = 6.30 vs. 3.50). Patients who valued fight cancer the most had worse self-prognosis (M = 69.23 % vs. 86.11 %), fewer treatment goals (M = 2.08 vs. 3.16), and lower optimism (M = 15.00 vs. 18.32).Conclusions: Patients with advanced cancer perceive treatment goals as separate from and more important than life goals. They hold optimistic expectancies for achieving their goals and for survival. Valuing cure highly may put patients at risk for experiencing psychological maladjustment. [ABSTRACT FROM AUTHOR]

Purpose: Do-not-resuscitate (DNR) orders are an important part of end-of-life care (EOL) for patients with incurable advanced lung cancer. The aim of this study was to investigate the clinical factors related to the acceptance of DNR orders by Chinese patients.Methods: This study was a retrospective analysis involving patients with advanced-stage (IIIB or IV) lung cancer who died in hospital at our center from August 2004 through August 2014. The patients' clinical characteristics and DNR forms were reviewed.Results: Of the 348 patients enrolled, 260 (74.7 %) provided DNR orders signed only by surrogates. The signing rate of DNR orders increased annually. The median interval from signing a DNR order to death was 1 day (range, 0-72 days). Patients with poor performance status (PS) (≥2) 1 week prior to death (OR, 3.395; 95 % CI, 1.536-7.502, P = 0.003) and relatively longer overall survival (OS) (>3 months) (OR, 2.464; 95 % CI, 1.566-4.472, P < 0.001) were more likely to sign DNR orders. CPR was performed on 10.3 % (27/260) of patients with DNR orders, and was withheld in 22.7 % (20/88) of patients without DNR orders.Conclusions: The DNR order-signing rate has been increasing annually among terminal patients with lung cancer in China. DNR orders, all of which were signed by surrogates, were more likely to be accepted by patients with slowly deteriorating disease and longer OS. More effort should be taken to help patients and medical professionals establish a sensible understanding of EOL care, including DNR orders, at earlier points during the disease course. [ABSTRACT FROM AUTHOR]

Purpose: The study aims to describe mechanisms that contribute to the tendency towards continuing chemotherapy in patients with advanced cancer.Methods: The study conducted qualitative observations of outpatient clinic visits of 28 patients with advanced cancer (glioblastoma and metastatic colorectal cancer).Results: We uncovered four mechanisms in daily oncology practice that can contribute to the tendency towards continuing chemotherapy in patients with advanced cancer: (1) "presenting the full therapy sets the standard"--patients seemed to base their justification for continuing chemotherapy on the "standard" therapy with the maximum number of cycles as presented by the physician at the start of the treatment; (2) "focus on standard evaluation moments hampers evaluation of care goals"--whether or not to continue the treatment was mostly only considered at standard evaluation moments; (3) "opening question guides towards focus on symptoms"--most patients gave an update of their physical symptoms in answer to the opening question of "How are you doing?" Physicians consequently discussed how to deal with this at length, which often took up most of the visit; (4) "treatment is perceived as the only option"--patients mostly wanted to continue with chemotherapy because they felt that they had to try every available option the physician offered. Physicians also often seemed to focus on treatment as the only option.Conclusion: Discussing care goals more regularly with the patient, facilitated for instance by implementing early palliative care, might help counter the mechanisms and enable a more well-considered decision. This could be either stopping or continuing chemotherapy. [ABSTRACT FROM AUTHOR]

Purpose: Terminally ill cancer patients experience progressive functional decline, accelerating symptom severity, deteriorating social support, and self-perceived burden to others (SPB), predisposing them to depressive symptoms. However, changes in the prevalence of severe depressive symptoms as death approaches and the unique roles of these four variables have not been adequately studied. This study explored longitudinal changes in and associations of symptom distress, functional dependence, social support, and SPB with prevalence of severe depressive symptoms in the last year of life.Methods: A convenience sample of 325 cancer patients was longitudinally followed until death. Prevalence of severe depressive symptoms (score ≥11 on the depression subscale of the Hospital Anxiety and Depression Scale) was examined by multivariate logistic regression modeling with the generalized estimating equation.Results: The prevalence of severe depressive symptoms increased as death approached. The likelihood of severe depressive symptoms was significantly higher in patients who had higher levels of symptom distress and functional dependence, received greater tangible support, and reported high SPB, but lower for patients reporting a higher level of affectionate support and positive social interactions with their supportive network.Conclusion: Prevalence of severe depressive symptoms increased as death approached and was associated with several modifiable factors. Healthcare professionals should become familiar with these factors to identify vulnerable patients. To decrease the likelihood of terminally ill cancer patients' severe depressive symptoms, they should receive effective interventions to manage their symptoms, appropriately foster social support to restore their fragile self-esteem due to depending on others, and lighten their SPB. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of the study was to explore relatives' descriptions and experiences of continuous sedation in end-of-life care for cancer patients and to identify and explain differences between respondents from the Netherlands, Belgium, and the UK. Methods: In-depth interviews were held between January 2011 and May 2012 with 38 relatives of 32 cancer patients who received continuous sedation until death in hospitals, the community, and hospices/palliative care units. Results: Relatives' descriptions of the practice referred to the outcome, to practical aspects, and to the goals of sedation. While most relatives believed sedation had contributed to a 'good death' for the patient, yet many expressed concerns. These related to anxieties about the patient's wellbeing, their own wellbeing, and questions about whether continuous sedation had shortened the patient's life (mostly UK), or whether an alternative approach would have been better. Such concerns seemed to have been prompted by relatives witnessing unexpected events such as the patient coming to awareness during sedation. In the Netherlands and in Belgium, several relatives reported that the start of the sedation allowed for a planned moment of 'saying goodbye'. In contrast, UK relatives discerned neither an explicit point at which sedation was started nor a specific moment of farewell. Conclusions: Relatives believed that sedation contributed to the patient having a good death. Nevertheless, they also expressed concerns that may have been provoked by unexpected events for which they were unprepared. There seems to exist differences in the process of saying goodbye between the NL/BE and the UK. [ABSTRACT FROM AUTHOR]

Purpose: Quality of life (QOL) at end of life (EOL) is related to important themes, e.g., 'sense of burden to others' and 'perceived posttraumatic growth,' which have never been investigated concurrently. The purposes of this study were: (1) to describe the trajectory of QOL during the dying process and (2) to identify determinants of QOL, including the roles of perceived sense of burden to others and posttraumatic growth. Methods: A convenience sample of 313 terminally ill cancer patients was surveyed and longitudinally followed until death. QOL was measured by a modified McGill quality of life scale, and determinants were evaluated by a multiple linear regression model with the generalized estimating equation. Results: Terminally ill Taiwanese cancer patients' QOL decreased substantially as their death approached. However, after controlling for confounders, patients' QOL did not change significantly in the last months of their life. QOL was significantly better for female and non-middle-aged patients with a religious affiliation of Buddhism/Taoism. Poorer QOL tended to be experienced by patients with greater physical symptom distress, anxiety, and depression. Patient QOL increased with greater tangible support, but decreased with greater emotional and affectionate social support. QOL was diminished by a greater degree of perceived burden to others but improved with greater perceived posttraumatic growth. Conclusions: Deteriorating QOL as death approaches may not be inevitable. Optimal QOL at EOL may be achieved by interventions designed to adequately manage physical and psychological symptoms, enhance social support, lighten perceived sense of burden to others, and facilitate experiences of posttraumatic growth. [ABSTRACT FROM AUTHOR]