BACKGROUND: Place of death is important to patients and caregivers, and often a surrogate measure of health care disparities. While recent trends in place of death suggest an increased frequency of dying at home, data is largely unknown for older adults with cancer.
METHODS: Deidentified death certificate data were obtained via the National Center for Health Statistics. All lung, colon, prostate, breast, and pancreas cancer deaths for older adults (defined as >65 years of age) from 2003 to 2017 were included. Multinomial logistic regression was used to test for differences in place of death associated with sociodemographic variables.
RESULTS: From 2003 through 2017, a total of 3,182,707 older adults died from lung, colon, breast, prostate and pancreas cancer. During this time, hospital and nursing home deaths decreased, and the rate of home and hospice facility deaths increased (all p < 0.001). In multivariable regression, all assessed variables were found to be associated with place of death. Overall, older age was associated with increased risk of nursing facility death versus home death. Black patients were more likely to experience hospital death (OR 1.7) and Hispanic ethnicity had lower odds of death in a nursing facility (OR 0.55). Since 2003, deaths in hospice facilities rapidly increased by 15%.
CONCLUSION: Hospital and nursing facility cancer deaths among older adults with cancer decreased since 2003, while deaths at home and hospice facilities increased. Differences in place of death were noted for non-white patients and older adults of advanced age.
OBJECTIVE: No prior studies have used a single sample of bereaved families of cancer patients to compare multiple scales for assessing Complicated Grief. Here, we compare the two measures.
METHODS: We sent a questionnaire to the bereaved families of cancer patients who had died at 71 palliative care units nationwide.
RESULTS: The analysis included 3173 returned questionnaires. Prevalence of Complicated Grief was 7.8% by Brief Grief Questionnaire (with a cutoff score of 8) and 15.5% for Inventory of Complicated Grief (with a cutoff score of 26). The Spearman's correlation coefficient between the Brief Grief Questionnaire and the Inventory of Complicated Grief was 0.79, and a ceiling effect was seen for the distribution of the Brief Grief Questionnaire scores. Although 6.4% of respondents scored both 8 or higher on the Brief Grief Questionnaire and 26 or higher on the Inventory of Complicated Grief, only 1.4% scored both 8 or higher on the Brief Grief Questionnaire and <26 on the Inventory of Complicated Grief. In contrast, 9.1% scored <8 on the Brief Grief Questionnaire but 26 or higher on the Inventory of Complicated Grief.
CONCLUSION: The prevalence of Complicated Grief was estimated to be higher by the Inventory of Complicated Grief than by the Brief Grief Questionnaire in this sample. Patients with severe Complicated Grief might be difficult to discriminate their intensity of grief by the Brief Grief Questionnaire. Once the diagnostic criteria of Complicated Grief are established, further research, such as optimization of cutoff points and calculations of sensitivity and specificity, will be necessary.
Background: This study was to investigate the prognostic factors of patients with advanced gastric cancer and described a sample model to better differentiate the patients who could better benefit from palliative chemotherapy.
Patients and methods: In this retrospective study, 112 gastric cancer patients at stage IV following first-line chemotherapy were enrolled from July 2013 to September 2019. The clinical factors including age, sex, ECOG, pathologic types, metastatic sites, blood indexes, response of first-line chemotherapy, and survival were collected. The treatment responses were evaluated using the response evaluation criteria in solid tumors (RECIST). The survival curves were drawn by the Kaplan-Meier method, and the independent prognostic factors of overall survival (OS) were analyzed by Cox proportional hazards regression model.
Results: In this study, the median overall survival (mOS) of gastric cancer patients was 10.5 months, the disease remission rate (PR) was 21.4%, and the disease control rate (DCR) was 86.6%. Multivariate analysis identified 5 independent prognostic factors: peritoneal metastasis [P = 0.002; hazard risk (HR), 2.394; 95% CI 1.394-4.113], hemoglobin <90g/L [P = 0.001; hazard risk (HR), 2.674; 95% CI 1.536-4.655], LDH =225 U/L [P = 0.033; hazard risk (HR), 1.818; 95% CI 1.409-3.150], and 3 times higher level of CEA [P = 0.006; hazard risk (HR), 2.123; 95% CI 1.238-3.640] along with CA199 [P = 0.005; hazard risk (HR), 2.544; 95% CI 1.332-4.856] than upper limit of normal. Based on the obtained data, a prognostic index was constructed, dividing the patients into three risk groups: low (n = 67), intermediate (n = 35), and high-risk group (n = 10). The mOS for low, intermediate, and high-risk groups was 13.9 months (95% CI 10.7-17.1), 8.1 months (95% CI 5.7-10.4), and 3.9 months (95% CI 2.6-5.3), respectively, whereas the 1-year survival rate was 56.4%, 20.0%, and 0.0%, respectively (P < 0.001).
Conclusion: This model should facilitate the prediction of treatment outcomes and then individualized treatment of advanced gastric cancer patients.
BACKGROUND: Treatment options for childhood cancer have improved substantially, although in many low- and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to palliative and survivorship care.
METHODS: Based on a literature review and expert opinions, we summarized current practice and recommendations on the following aspects of childhood cancer in Latin America: diagnostic processes and time to diagnosis, stage at diagnosis, treatments and complications, survivorship programs and palliative care and end-of-life services.
RESULTS: Latin America is a huge and heterogeneous continent. Identified barriers show similar problems between countries, both logistically (time and distance to centers, treatment interruptions) and financially (cost of care, cost of absence from work). Governmental actions in several countries improved the survival of children with cancer, but difficulties persist in timely diagnosis and providing adequate treatment to all childhood cancer patients in institutions with complete infrastructure. Treatment abandonment is still common, although the situation is improving. Cancer care in the region has mostly focused on acute treatment of the disease and has not adequately considered palliative and end-of-life care and monitoring of survivors.
CONCLUSIONS: Decentralizing diagnostic activities and centralizing specialized treatment will remain necessary; measures to facilitate logistics and costs of transportation of the child and caretakers should be implemented. Twinning actions with specialized centers in high income countries for help in diagnosis, treatment and education of professionals and family members have been shown to work. Palliative and end-of-life care as well as childhood cancer survivorship plans are needed.
The "opioid crisis" stemming from overprescribing of prescription opioids describes an iatrogenic situation which has resulted in a rise in opioid use disorder (OUD) and overdose deaths. Many of these patients suffer from chronic non-cancer pain syndromes (CNCP) who have been injudiciously treated with opioids. Some patients with CNCP are treated successfully with opioids in accordance with modern guidelines. There is a very complex, small group of patients with CNCP who require higher than recommended dosages of opioids when other modalities and treatments have failed. We describe such a patient and believe that there is a subset of patients with unremitting suffering from chronic pain which we have called end-stage chronic pain (ESCP). These patients, despite receiving expert chronic pain care, often require high doses of opioids and suffer a dramatic decline in quality of life (QOL), function and an increase in their suffering when their opioids are tapered or discontinued. We have responded to the treatment of this group of patients by critically examining our approach to the use of opioids for their pain and attempting to reconcile high dose opioids in the setting of the Center for Disease Control (CDC) guidelines. We describe a patient with severe chronic pain from congenital spinal disease who experienced increased pain and suffering when his opioids were tapered. We will discuss our approach to this patient and in doing so discuss the concept of ESCP and proposed criteria for the use of high dose opioids in such patients.
BACKGROUND: The context of care provided in long-term care homes is changing, as an increasing number of older adults are entering long-term care with advance stages of illness and higher care needs. Long-term care homes are quickly becoming the place of death for an increasing number of older adults, despite recent literature identifying inadequate and suboptimal levels of end-of-life care. Within long-term care, healthcare assistants represent 60%-70% of the unregulated workforce and provide 70%-90% of the direct care to residents. Research indicates that a high level of uncertainty exists surrounding the role of healthcare assistants in end-of-life care, with numerous studies reporting the role of healthcare assistants to be 'unclear' with varying levels of responsibilities and autonomy.
OBJECTIVE: The purpose of this scoping review was to explore healthcare assistants' experiences and perspectives of their role in end-of-life care in long-term care.
METHODS: We applied Arksey and O'Malley's methodological framework, with recommendations from Levac and colleagues' guiding principles. Electronic databases and the grey literature were searched for relevant articles. Search concepts included end-of-life care and healthcare assistants. Articles were included in this review if they explored healthcare assistants' experiences or perspectives of providing end-of-life care in long-term care. The peaceful end of life theory by Ruland and Moore (1998) was used to organise data extraction and analysis.
RESULTS: A total of n = 15 articles met the inclusion criteria. The most predominant role-required behaviours reported by healthcare assistants were as follows: psychosocial support to significant others, knows the resident's care wishes and physical care with respect and dignity. The most predominant extra-role behaviours reported by healthcare assistants were as follows: becoming emotionally involved, acting as extended family and ensuring residents do not die alone.
CONCLUSIONS: Findings from this review expanded the concept of end-of-life care by illustrating the role-required and extra-role behaviours healthcare assistants perform when providing end-of-life care in long-term care.
IMPLICATIONS FOR PRACTICE: Findings from this scoping review highlight the numerous behaviours healthcare assistants perform outside their role description in order to provide end-of-life care to dying residents in long-term care. These findings could inform policymakers and managers of long-term care homes.
PURPOSE: The Norwegian Health Personnel Act (HPA §10a) obliges health professionals to contribute to meeting minor children's need for information about their parents' illness and prognosis. Previous research has shown that many parents withhold information about illness and anticipated death from their children. This study explored main considerations for palliative health-care professionals in these situations, and how they negotiate conflicting considerations of confidentiality and child involvement.
METHOD: This qualitative exploratory study involved semi-structured interviews with 11 palliative health-care professionals. Hermeneutics informed the data analysis.
RESULTS: The health professionals' main considerations were sustaining patients' hope and building trust in the professional-patient relationship. Both concerns were grounded in respect for patient autonomy. The health professionals negotiated patient autonomy and child involvement in different ways, defined in the present analysis on a continuum ranging from granting full patient autonomy to going directly against patients' will.
CONCLUSIONS: The professional-patient relationship is the primary consideration in the health care context, and decision making on the degree of children's involvement happens in a dialogical process between health professionals and patients. Close professional-patient relationships might increase the emotional impacts on health professionals, who consequently might give greater relative weight to patients' will. We propose that procedures for initiating collaboration with professionals in the child's everyday life context help health professionals involving the child without threatening trust.
STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms.
DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale).
RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms.
CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.
BACKGROUND: Continuity of care is challenging when transferring patients across palliative care settings. These transfers are common due to the complexity of palliative care, which has increased significantly since the advent of palliative care services. It is unclear how palliative care services and professionals currently collaborate and communicate to ensure the continuity of care across settings, and how patient and family members are involved.
AIM: To explore healthcare professionals' experiences regarding the communicative aspects of inter-professional collaboration and the involvement of patient and family members.
DESIGN: Qualitative design, including focus group discussions.
SETTING/PARTICIPANTS: The study focused on one palliative care network in Belgium and involved all palliative care settings: hospital, hospital's palliative care unit, home care, nursing home. Nine group discussions were conducted, with diverse professionals (n = 53) from different care settings.
RESULTS: Timely and effective inter-professional information exchange was considered fundamental. A perceived barrier for interprofessional collaboration was the lack of a shared electronic health record. Efficiency regarding multidisciplinary team meetings and inter-professional communication were subject to improvement.A striking study finding was the perceived insufficient open communication of specialists towards patients and the lack of shared decision making. This not only hampered advance care planning discussions and early integration of palliative home care, but also the functioning of other professionals.
CONCLUSION: From the perspective of the integrated care framework, several areas of improvement on different levels of care and collaboration are identified. Support from policymakers and researchers is required to achieve integrated palliative care in regional networks.
Background: Prognostic uncertainty delays discussions and leads to unnecessary treatments for older patients who are dying. The aim of this study was to investigate the feasibility of using routinely collected data from MedicineInsight, a large Australian general practice database, to flag indicators of near end-of-life (nEOL) in patients aged =75 years and evaluate their association with death over 12 months.
Methods: A retrospective chart review was used to assess the feasibility of identifying these indicators in the data (160,897 patients from 464 practices across Australia). Conditional logistic regression was used to assess the independent contribution of nEOL indicators in patients aged 75–84 and =85 years using a case-control design matching by practice.
Results: The strongest indicators for nEOL status were advanced malignancy, residential aged care, nutritional vulnerability, anaemia, cognitive impairment and heart failure. Other indicators included hospital attendance, pneumonia, decubitus ulcer, chronic obstructive pulmonary disease, antipsychotic prescription, male sex and stroke.
Discussion: Consideration of routinely collected patient data may suggest nEOL status and trigger advance care planning discussions.
BACKGROUND: Patients with end-stage liver disease (ESLD) have limited treatment options and have a deteriorated quality of life with an uncertain prognosis. Early identification of ESLD patients with a poor prognosis is valuable, especially for palliative care. However, it is difficult to predict ESLD patients that require either acute care or palliative care.
OBJECTIVE: We sought to create a machine-learning monitoring system that can predict mortality or classify ESLD patients. Several machine-learning models with visualized graphs, decision trees, ensemble learning, and clustering were assessed.
METHODS: A retrospective cohort study was conducted using electronic medical records of patients from Wan Fang Hospital and Taipei Medical University Hospital. A total of 1214 patients from Wan Fang Hospital were used to establish a dataset for training and 689 patients from Taipei Medical University Hospital were used as a validation set.
RESULTS: The overall mortality rate of patients in the training set and validation set was 28.3% (257/907) and 22.6% (145/643), respectively. In traditional clinical scoring models, prothrombin time-international normalized ratio, which was significant in the Cox regression (P<.001, hazard ratio 1.288), had a prominent influence on predicting mortality, and the area under the receiver operating characteristic (ROC) curve reached approximately 0.75. In supervised machine-learning models, the concordance statistic of ROC curves reached 0.852 for the random forest model and reached 0.833 for the adaptive boosting model. Blood urea nitrogen, bilirubin, and sodium were regarded as critical factors for predicting mortality. Creatinine, hemoglobin, and albumin were also significant mortality predictors. In unsupervised learning models, hierarchical clustering analysis could accurately group acute death patients and palliative care patients into different clusters from patients in the survival group.
CONCLUSIONS: Medical artificial intelligence has become a cutting-edge tool in clinical medicine, as it has been found to have predictive ability in several diseases. The machine-learning monitoring system developed in this study involves multifaceted analyses, which include various aspects for evaluation and diagnosis. This strength makes the clinical results more objective and reliable. Moreover, the visualized interface in this system offers more intelligible outcomes. Therefore, this machine-learning monitoring system provides a comprehensive approach for assessing patient condition, and may help to classify acute death patients and palliative care patients. Upon further validation and improvement, the system may be used to help physicians in the management of ESLD patients.
Complex wounds are common complications in hospice and palliative medicine (HPM), especially in patients with aggressive malignancies. Myiasis, or an infestation of maggots, is a rare but significant complication of such wounds. While uncommon in the United States, many HPM patients have multiple risk factors and comorbidities that increase their vulnerability to this condition. Currently, there are no standard diagnostic or treatment guidelines for wound myiasis. In addition, common management strategies may not be easily accessible in HPM settings. We present this case of a patient with malignant squamous cell carcinoma of the neck complicated by myiasis while in hospice, and our experience diagnosing and managing her infestation. We also reflect on special considerations for HPM patients when addressing the physical and psychological symptoms of wound myiasis.
PURPOSE OF REVIEW: Palliative care is increasingly acknowledged as beneficial in supporting patients and families affected by heart failure, but policy documents have generally focused on the chronic form of this disease. We examined palliative care provision for those with acute heart failure, based on the recently updated National Consensus Project Clinical Practice Guidelines for Quality Palliative Care.
RECENT FINDINGS: The commonest reason for hospitalization in those > 65 years, acute heart failure admissions delineate crisis points on the unpredictable disease trajectory. Palliative care is underutilized, often perceived as limited to end-of-life care rather than determined by regular systematic needs assessment. No dominant paradigm of palliative care provision has emerged from the nascent evidence base related to this clinical cohort, underscoring the need for further research. Embedding palliative support as mainstream to heart failure care from the point of diagnosis may better ensure treatment strategies for those admitted with acute heart failure remain consistent with patients' preferences and values.
Strategies to increase appropriateness of EoL care, such as shared decision making (SDM), and advance care planning (ACP) are internationally embraced, especially since the COVID-19 pandemic. However, individuals preferences regarding EoL care may differ internationally. Current literature lacks insight in how preferences in EoL care differ between countries and continents. This study's aim is to compare Dutch and Japanese general publics attitudes and preferences toward EoL care, and EoL decisions.
Methods: a cross-sectional survey design was chosen. The survey was held among samples of the Dutch and Japanese general public, using a Nationwide social research panel of 220.000 registrants in the Netherlands and 1.200.000 in Japan. A quota sampling was done (age, gender, and living area). N = 1.040 in each country.
More Japanese than Dutch citizens tend to avoid thinking in advance about future situations of dependence (26.0% vs 9.4%; P = .000); say they would feel themselves a burden for relatives if they would become dependent in their last phase of life (79.3% vs 47.8%; P = .000); and choose the hospital as their preferred place of death (19.4% vs 3.6% P = .000). More Dutch than Japanese people say they would be happy with a proactive approach of their doctor regarding EoL issues (78.0% vs 65.1% JPN; P = .000).
Preferences in EoL care substantially differ between the Netherlands and Japan. These differences should be taken into account a) when interpreting geographical variation in EoL care, and b) if strategies such as SDM or ACP – are considered. Such strategies will fail if an international “one size fits all” approach would be followed.
OBJECTIVES: The aim was to review evidence from all randomized controlled trials (RCTs) using palliative care education or staff training as an intervention to improve nursing home residents' quality of life (QOL) or quality of dying (QOD) or to reduce burdensome hospitalizations.
DESIGN: A systematic review with a narrative summary.
SETTING AND PARTICIPANTS: Residents in nursing homes and other long-term care facilities.
METHODS: We searched MEDLINE, CINAHL, PsycINFO, the Cochrane Library, Scopus, and Google Scholar, references of known articles, previous reviews, and recent volumes of key journals. RCTs were included in the review. Methodologic quality was assessed.
RESULTS: The search yielded 932 articles after removing the duplicates. Of them, 16 cluster RCTs fulfilled inclusion criteria for analysis. There was a great variety in the interventions with respect to learning methods, intensity, complexity, and length of staff training. Most interventions featured other elements besides staff training. In the 6 high-quality trials, only 1 showed a reduction in hospitalizations, whereas among 6 moderate-quality trials 2 suggested a reduction in hospitalizations. None of the high-quality trials showed effects on residents' QOL or QOD. Staff reported an improved QOD in 1 moderate-quality trial.
CONCLUSIONS AND IMPLICATIONS: Irrespective of the means of staff training, there were surprisingly few effects of education on residents' QOL, QOD, or burdensome hospitalizations. Further studies are needed to explore the reasons behind these findings.
PURPOSE: Defining patients as 'terminally-ill' may be difficult. Therefore, determining when to shift the goal of care from curative to comfort care may be extremely challenging. The aim of this study was to merge when and how Registered Nurses (RNs) and Nurses' Assistants (NAs) adjust end-of-life care to pursue patient comfort at the end of their lives.
METHODS: A descriptive qualitative study based on multiple focus groups was performed in 2017 according to the COnsolidated criteria for REporting Qualitative research guidelines. In all, 25 RNs and 16 NAs across seven north-east Italian facilities that provide end-of-life care, voluntarily participated in the study. Each focus group was conducted following the same interview guide with open-ended questions, and was audiotaped. A thematic analysis was applied to interview transcripts.
RESULTS: The process of nursing care plan adjustment is based upon two main themes, around 'when' and 'how' to adjust it. Regarding when, 'Detecting the turning point', and 'Being ready to change continuously until the end' emerged as the main sub-themes. Regarding how, 'Weighing harms and benefits of nursing care interventions'; 'Advocating for patients' wishes', 'Sharing the adjustments inside the team at different levels', 'Involving family in the adjustments of nursing care'; and 'Allowing care to move away from evidence-based practice' were the sub-themes emerged.
CONCLUSIONS: Shedding light on the implicit decisional processes that inform care adjustments and the implementation of related strategies is essential to improve the quality of end-of-life care given that an early detection of the terminal phase has been reported to result in changes of care improving outcomes.
Background: A minority of individuals use a large portion of health system resources, incurring considerable costs, especially in acute-care hospitals where a significant proportion of deaths occur. We sought to describe and contrast the characteristics, acute-care use and cost in the last year of life among high users and non-high users who died in hospitals across Canada.
Methods: We conducted a population-based retrospective-cohort study of Canadian adults aged =18 who died in hospitals across Canada between fiscal years 2011/12–2014/15. High users were defined as patients within the top 10% of highest cumulative acute-care costs in each fiscal year. Patients were categorized as: persistent high users (high-cost in death year and year prior), non-persistent high users (high-cost in death year only) and non-high users (never high-cost). Discharge abstracts were used to measure characteristics and acute-care use, including number of hospitalizations, admissions to intensive-care-unit (ICU), and alternate-level-of-care (ALC).
Results: We identified 191,310 decedents, among which 6% were persistent high users, 41% were non-persistent high users, and 46% were non-high users. A larger proportion of high users were male, younger, and had multimorbidity than non-high users. In the last year of life, persistent high users had multiple hospitalizations more often than other groups. Twenty-eight percent of persistent high users had =2 ICU admissions, compared to 8% of non-persistent high users and only 1% of non-high users. Eleven percent of persistent high users had =2 ALC admissions, compared to only 2% of non-persistent high users and < 1% of non-high users. High users received an in-hospital intervention more often than non-high users (36% vs. 19%). Despite representing only 47% of the cohort, persistent and non-persistent high users accounted for 83% of acute-care costs.
Conclusions: High users – persistent and non-persistent – are medically complex and use a disproportionate amount of acute-care resources at the end of life. A greater understanding of the characteristics and circumstances that lead to persistently high use of inpatient services may help inform strategies to prevent hospitalizations and off-set current healthcare costs while improving patient outcomes.
Palliative care research raises a host of ethical concerns. Obtaining informed consent from seriously ill patients and their families is often perceived as an additional burden. Alternative approaches to traditional written informed consent reflects the changing nature of modern trial design, embracing real-world effectiveness and pragmatic clinical trials with those who are seriously ill. Ethicists, clinical investigators, and regulatory bodies have acknowledged the challenges to rigorous, meaningful, and generalizable research across diverse patient populations in real-world settings. The purpose of this paper is to describe how these clinical trial designs have driven innovation in methods for achieving informed consent, with a focus on palliative care research. In this paper, we describe, and provide examples of consent waivers and three types of alternative approaches to consent, including broadcast notification, and integrated and targeted consent. We also present our experiences in an ongoing palliative care clinical trial, specifically using broadcast notification. Working with participants and regulatory oversight organizations, investigators can address the limits of traditional written informed consent and adopt innovative consent models to advance the science of palliative care. Research is now needed to determine the impact of these differing consent models on clinical trial recruitment, enrollment, and retention, as well as participants' informed understanding of their research participation using such models.
BACKGROUND: A recent randomized trial of bereaved family members of patients who died in an intensive care unit identified symptoms of depression and posttraumatic stress in recipients of semistructured condolence letters.
OBJECTIVES: To explore family member and clinician experiences with receiving or sending handwritten sympathy cards upon the death of patients involved in a personalized end-of-life intervention, the 3 Wishes Project.
METHODS: Interviews and focus groups were held with 171 family members and 222 clinicians at 4 centers to discuss their experiences with the 3 Wishes Project. Interview transcripts were searched to identify participants who discussed sympathy cards. Data related to sympathy cards were independently coded by 2 investigators through conventional content analysis.
RESULTS: Sympathy cards were discussed during 32 interviews (by 25 family members of 21 patients and by 11 clinicians) and 2 focus groups (8 other clinicians). Family members reported that personalized sympathy cards were a welcome surprise; they experienced them as a heartfelt act of compassion. Clinicians viewed cards as an opportunity to express shared humanity with families, reminding them that they and their loved one were not forgotten. Signing cards allowed clinicians to reminisce individually and collectively with colleagues. Family members and clinicians experienced sympathy cards as a meaningful continuation of care after a patient's death.
CONCLUSIONS: Inviting clinicians who cared for deceased patients to offer personalized, handwritten condolences to bereaved family members may cultivate sincere and individualized expressions of sympathy that bereaved families appreciate after the death of patients involved in the 3 Wishes Project.
Context: The development of palliative care services is a public health priority. The Japanese Cancer Control Act has been promoting palliative care services nationwide for over 10 years.
Objectives: To evaluate long-term changes in the structure and processes of hospital palliative cancer care services nationwide.
Methods: This was an observational study using three representative questionnaire surveys between 2008 and 2018. The questionnaire consisted of domains on the structure and process regarding hospital palliative cancer care services. The changes over time were assessed using the MacNemar test. The differences between groups, namely community hospitals and designated cancer hospitals, were determined using 2 tests.
Results: We analyzed changes over time from 281 designated cancer hospitals and compared the services between 1395 community hospitals and 380 designated cancer hospitals. The development of the structure and processes for designated cancer hospital's palliative cancer care services was greater for 10 years including the number of Palliative Care Consultation Teams (PCTs) with more than 50 patient referrals annually (from 2010 to 2018: 76.2% to 85.4%, P < 0.001). The palliative cancer care services of community hospitals were poorly prepared compared with designated cancer hospitals in 2018, such as the “direct medical care by any member of the Palliative Care Consultation Team at least 3 times a week (41.7% vs. 81.3%; P < 0.001).
Conclusion: Hospital palliative cancer care services in designated cancer hospitals have developed significantly from 2008 to 2018. Building a system to promote palliative care services in community hospitals is a challenge for the next decade.