Concept of good death in people with dementia: a cross-sectional questionnaire survey of bereaved family members and medical professionals.

Background: There is limited quantitative evidence regarding good death for people with dementia.

Aims: To clarify which components of good death are important for people with dementia and to identify the component structure of good death through explanatory factor analysis.

Design: A web-based questionnaire survey was conducted where bereaved family members and professionals were asked to rate the importance of the 44 items identified from previous qualitative interviews as components of 'good death'.

Associations Between Anticipatory Grief and Post-Bereavement Depression and Post-Loss Grief of Family Members of Dying Patients With Cancer in Palliative Care Units: A Cohort Study.

Anticipatory grief is associated with post-bereavement grief; however, reports on the influence of pre-loss depression are limited. Therefore, we investigated the association between the anticipatory grief of family members and post-loss and post-depression grief adjusted for pre-loss depression. This cohort study included the family members of dying patients with cancer.

Protocol of a nation-wide post-bereavement survey on quality of hospice and palliative care: J-HOPE 5 study.

Background: Maintaining quality of care and improving the quality of life (QOL) of patients and their families are important issues in palliative care. Therefore, there is a need to continuously evaluate the quality and outcomes of the care provided. In Japan, the Japan hospice and palliative evaluation (J-HOPE) study series has been conducted every three to four years since 2010, and we will conduct the fifth J-HOPE study (J-HOPE5).

Resilience and coping styles in family caregivers of terminally ill patients: A cross-sectional survey.

Objectives: Coping styles can be improved by dyadic palliative care interventions and may alleviate patients' and family caregivers' distress. Moreover, family caregivers' preloss resilience protects against depression after bereavement. This study aimed to determine the types of coping styles can be encouraged to increase resilience.

Development and validation of clinical implementation methods for patient-reported outcomes in Japanese multi-center palliative care units.

Background: Patient-Reported Outcomes (PROs) are recommended for use in clinical oncology. However, they are not routinely used in professional palliative care practices in Japan. The reasons include both patient and healthcare provider factors and the implementation of PROs.

Reliability and validity of the Japanese version of the Parenting Concerns Questionnaire.

Objective: Cancer patients with children are increasing; however, few studies have quantitatively assessed the parenting concerns of cancer patients with children. The Parenting Concerns Questionnaire was developed in the USA in 2012 and is the only instrument to measure the parenting concerns of cancer patients with children. This study aimed to develop a Japanese version of the Parenting Concerns Questionnaire and evaluate its reliability and validity.

Factors associated with the preparedness for bereavement in families of patients with cancer: A secondary analysis of a nationwide bereaved family survey.

Objectives: Insufficient preparedness for bereavement can affect a family's psychological health status after bereavement. However, factors associated with preparedness remain unclear. This study aimed to identify factors associated with preparedness for bereavement in families of patients with cancer.

Aggressive End-of-Life Treatments Among Inpatients With Cancer and Non-cancer Diseases Using a Japanese National Claims Database.

To describe aggressive treatments at end-of-life among inpatients with cancer and non-cancer diseases and to evaluate factors associated with these treatments using the Japanese national database (NDB). We conducted a retrospective cohort study among inpatients aged ≥ 20 years who died between 2012 and 2015 using a sampling dataset of NDB. The outcome was the proportion of aggressive treatments in the last 14 days of life.

Validity and reliability of the Integrated Palliative Care Outcome Scale for non-cancer patients.

Aim: This study assessed the validity and reliability of the Integrated Palliative Care Outcome Scale for non-cancer patients.

Methods: We recruited 223 non-cancer patients receiving palliative care and their healthcare providers (222) across two home care facilities and two hospitals for a cross-sectional study. We assessed the construct validity and known-group validity of the Integrated Palliative Care Outcome Scale.

Routine patient assessment and the use of patient-reported outcomes in specialized palliative care in Japan.

Background: Discrepancies in symptom assessment between providers and patients are reported in cancer care, and the use of patient-reported outcome measures (PROMs) has been recommended for patients receiving palliative care. However, the status of the routine use of PROMs in palliative care in Japan is presently unclear. Therefore, this study aimed to clarify this complex question.

The Impact of Stressful Life Events after Bereavement: A Nationwide Cross-sectional Survey.

Context: Bereaved family members sometimes experience distress due to stressful life events. However, the effects of this distress on depression and grief remain unclear.

Objectives: To clarify the degree of distress due to postbereavement stressful life events, its associated factors, especially social isolation, and its effects on major depressive disorder (MDD) and complicated grief (CG) risks among bereaved family members of patients with cancer.

Primary palliative care in Japan: needs estimation and projections - national database study with international comparisons.

Objectives: We aimed to estimate the potential population that requires palliative care, clarify the relationship between this population and the rate of ageing in Japan, and compare these trends with those of other countries.

Design: We used the national death registration data and population projections for Japan to estimate the population in need of palliative care using the minimal estimate method developed by Murtagh . Linear regression was used to create a model of mortality using sex, age at intervals of 5 years, and each major disease classification.

Complexity in the context of palliative care: a systematic review.

Background: People receiving palliative care have complex, wide-ranging, and changing needs, not just physical distress, but also psychosocial, practical, and spiritual. Influences on complexity in palliative care are different among healthcare providers and may depend on diverse aspects of the patient's condition, time, and environment. Therefore, this study aimed to integrate and describe the perspective of complexity in palliative care.

Machine learning models to detect social distress, spiritual pain, and severe physical psychological symptoms in terminally ill patients with cancer from unstructured text data in electronic medical records.

Background: Few studies have developed automatic systems for identifying social distress, spiritual pain, and severe physical and phycological symptoms from text data in electronic medical records.

Aim: To develop models to detect social distress, spiritual pain, and severe physical and psychological symptoms in terminally ill patients with cancer from unstructured text data contained in electronic medical records.

Design: A retrospective study of 1,554,736 narrative clinical records was analyzed 1 month before patients died.

Experience of the temporary discharge from the inpatient palliative care unit: A nationwide post-bereavement survey for end-of-life cancer patients.

Objective: Inpatient palliative care units (PCUs) have two roles: place of death and symptom control. In case of symptom control, most patients whose distressing symptoms could be relieved would be temporarily discharged back home. However, the experience of the patient and their family during temporary discharge is unclear.

Bathing in Terminal Care of Cancer Patients and Its Relation to Perceptions of a "Good Death": A Nationwide Bereavement Survey in Japan.

Background: Bathing in a tub is integral to Japanese culture. It improves palliative care patients' symptoms and may improve quality of life.

Objectives: This study aimed to determine the prevalence and impressions of bathing for terminally ill cancer patients and its relations to the evaluations of perceived end-of-life care and achievement of a good death.

Comparison of the quality of death between primary malignant brain tumor patients and other cancer patients: results from a nationwide bereavement survey in Japan.

Purpose: No studies have investigated the association between malignant brain tumor and the quality of dying, which is an important outcome in end-of-life care. This study aimed to clarify whether the quality of dying and related factors in patients with malignant brain tumor differ from those in patients with other malignant diseases.

Methods: This was a secondary analysis of data collected by two nationwide, multicenter, bereavement surveys of palliative care units in Japan.

Association between experiences of advanced cancer patients at the end of life and depression in their bereaved caregivers.

Objective: Research on the association between circumstances of death in advanced cancer patients and depression in their bereaved caregivers is limited.

Methods: A longitudinal study was performed on patients admitted to 21 inpatient hospices/palliative care units (PCUs) in Japan. Patient symptoms were assessed at admission and in the last 3 days of life.

Influence of financial burden on withdrawal or change of cancer treatment in Japan: results of a bereavement survey.

Purpose: This study aimed to examine the effect of financial burden of cancer treatment from diagnosis to end-of-life on treatment withdrawal or change in Japan.

Methods: This study was part of a nationwide survey of bereaved family members of cancer patients in Japan (J-HOPE2016 study). Questions regarding withdrawal or change of cancer treatment (stratified according to whether the treatment was recommended by physicians or based on the patients' request), financial difficulties in coping with cancer treatment expenses, and the participants' socioeconomic background were asked.

Association between temporary discharge from the inpatient palliative care unit and achievement of good death in end-of-life cancer patients: A nationwide survey of bereaved family members.

Aim: To explore the unclear association between temporary discharge home from the palliative care unit and achievement of good death, in the background of increases in discharge from the palliative care unit. Association between experiences and circumstances of patient and family and duration of temporary discharge was also examined.

Methods: This study was a secondary analysis of data from a nationwide post-bereavement survey.