Unapproved and unproven cancer treatments in patients admitted to palliative care units.

Purpose: To clarify the current use of unapproved and unproven cancer treatment (UUCT) among the bereaved families of patients with cancer who died in palliative care units, the financial burden and psychological experiences of the families, and the relationship between patients in palliative care who used UUCT and communication with their physicians'.

Methods: This study was conducted as part of a cross-sectional, anonymous nationwide survey of the bereaved family members of cancer patients who died in palliative care unit in Japan.

Results: Questionnaires were sent to 1,039 bereaved family members, and responses were received from 661 (64%).

Good Death and Quality of End-of-Life Care in Patients with Coexisting Cancer and Dementia: Perspective of Bereaved Families.

Background: Patients with coexisting cancer and dementia often have complex health care needs and face challenges in achieving a good death.

Objectives: To evaluate good death achievement and end-of-life (EOL) care in patients with coexisting cancer and dementia from the perspective of bereaved families.

Design: Cross-sectional nationwide postal survey.

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.

Need for Improvement in Death Pronouncements in Palliative Care Units.

Background: Death pronouncement is an important moment that can impact a family's bereavement process; however, necessary improvements in physicians' behavior during death pronouncement remain unclear.

Objectives: To explore whether the lack of certain behaviors by the physician was associated with a perceived need for improving death pronouncement for advanced cancer patients in palliative care units (PCUs).

Methods: This study was a secondary analysis of a nationwide multicenter questionnaire survey conducted in 2018 that targeted bereaved family members of cancer patients who died in PCUs.

Continuous Electrocardiographic Monitoring for 24 Hours Before Death in Patients with Terminal Cancer.

Background: Purposeless physiological monitoring at the end-of-life is not recommended. However, studies on how families feel regarding the death of patients with terminal cancer without continuous electrocardiographic monitoring (CEM) are lacking.

Objectives: To explore the impact on the quality of care and the feelings and psychological distress experienced by families when CEM is not used during the 24 hours preceding a patient's death.

Web-Based Post-Bereavement Survey System in Specialized Palliative Care: A Feasibility Pilot Study.

Web-based post-bereavement survey systems for specialized palliative care will enable obtaining timely results on the care quality from more participants at a lower cost. The primary aim of the study was to develop a web-based post-bereavement survey system and to compare response rates for different number of items. The secondary aim was to examine response bias between web-based and mail survey in post-bereavement surveys.

Nationwide Survey on Caregiver Burden When Supporting Terminal Cancer Patients with Dementia: Bereaved Family Members' Perspective.

The prevalence of dementia and cancer has increased in recent years. The presence of dementia complicates the care of terminal cancer patients and affects their family caregivers. However, palliative care research seldom focuses on the family caregivers of patients with terminal cancer and dementia.

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.

Comparative study of clinicians' and family members' perceptions of patients' end-of-life experiences.

Objective: End-of-life experiences (ELEs), such as deathbed visions (DBVs), have been reported worldwide. However, ELEs have rarely been discussed in clinical practice, possibly because of the different perceptions of ELEs among clinicians and families. Therefore, this study aimed to investigate the differences in perception regarding ELEs, especially DBVs, between clinicians and families.

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.

Nationwide survey on family caregiver-perceived experiences of patients with cancer of unknown primary site.

Purpose: Cancer of unknown primary site (CUP) is an aggressive disease with poor prognosis. As research on the experiences of CUP patients and their families is scarce, this study aimed to compare the family caregiver-perceived burden of CUP with that of common cancers (lung, colon, and stomach cancers). The association between family caregiver-perceived burden and CUP patients' quality of life (QOL) at end-of-life and family depression, respectively, was also explored.

The impact of death rattle on bereaved families: not the sound itself, but the resonance with their feelings.

Background: This study aimed to explore (i) the consistency between physician-rated and bereaved family-perceived intensity of death rattle, (ii) the relationship between intensity of death rattle and the bereaved family's distress and (iii) the bereaved family's experience and feelings related to suctioning for death rattle.

Methods: We used matched data for deceased patients from a prospective cohort study of cancer patients admitted to a palliative care unit, and their bereaved families from a nationwide questionnaire survey in Japan. The intensity of death rattle using Back's score was evaluated prospectively by physicians and retrospectively by bereaved families.

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.

Private or shared room? A nationwide questionnaire survey on bereaved family members' perceptions of where patients spend their last days.

Background: Where patients receive end-of-life care influences their quality of life.

Objectives: To clarify the effects of staying in a private or shared room in inpatient hospices.

Design: A part of a Japanese multicentre survey to evaluate the quality of end-of-life care.

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.

Family experience of palliative sedation therapy: proportional vs. continuous deep sedation.

Purpose: Some patients experience intense symptoms refractory to intensive palliative care, and palliative sedation is sometimes used. Palliative sedation may be classified into proportional and continuous deep sedation (CDS). The primary aim of this study was to compare family experience between families of patients who received proportional or CDS.

Care needs level in long-term care insurance system and family caregivers' self-perceived time-dependent burden in patients with home palliative care for cancer: a cross-sectional study.

Purpose: Although home care improves patients' quality of life (QOL), several studies have suggested that home care lowers the QOL of family caregivers and decreases their mortality. To alleviate the deleterious impact of home care on caregivers, the major burdens on caregivers and the clinical characteristics of the caregivers vulnerable to the major burden needs to be clarified.

Method: A survey questionnaire was distributed to 710 family caregivers of patients with cancer in Japan, and 342 valid responses were obtained (valid response rate: 48.

Are family relationships associated with family conflict in advanced cancer patients?

Objectives: Family conflict during end-of-life care is an important issue for advanced cancer patients and their families, although studies are lacking. We investigated the association between family relationships and family conflict in advanced cancer patients.

Methods: This study was a secondary analysis of a nationwide multicenter questionnaire survey targeting the bereaved family members of cancer patients who died in palliative care units, general wards, or at home to evaluate the quality of end-of-life care in Japan.

Appropriate referral timing to specialized palliative care service: survey of bereaved families of cancer patients who died in palliative care units.

Few studies have investigated appropriate referral timing of specialized palliative care (SPC) from the perspective of cancer patients' and families' experiences. We aimed to clarify appropriate SPC referral timing for patients with advanced cancer and their families. We used data from a nationwide bereaved family survey in Japan.

Changes in depressive symptoms among family caregivers of patients with cancer after bereavement and their association with resilience: A prospective cohort study.

Objectives: To elucidate changes in depressive symptoms after bereavement and the impact of pre-loss resilience on such changes and on the extent of complicated grief and posttraumatic growth.

Methods: Prospective cohort surveys were provided to family caregivers of patients with cancer in four palliative care units (PCUs) before and after bereavement. Pre-loss Connor-Davidson Resilience Scale scores, pre- and post-loss Patient Health Questionnaire-9 scores, post-loss Brief Grief Questionnaire scores, and the expanded Posttraumatic Growth Inventory scores were determined.