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A caregiver’s prognostic awareness can affect clinical decisions for the patient. The purpose of this study was to examine the impact of family caregivers’ prognostic awareness on the quality of life (QOL) and emotional state of both patients with advanced cancer and their caregivers. This prospective cohort study was conducted from December of 2016 to January of 2018. A total of 159 patients with advanced cancer and an equal number of caregivers participated. The investigation tools used include the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C15-Palliative, the McGill Quality of Life Questionnaire, and the Patient Health Questionnaire-9, and evaluation was performed at baseline, 3 months, and 6 months. Covariance analysis with a general linear modeling was used to compare changes in quality of life scores according to the caregivers’ awareness of the prognosis. Mean patient overall QOL score increased in the group of caregivers who were aware of prognosis and decreased in the caregivers who were not aware of the prognosis (p = 0.018). The changes over time in the patients’ QOL scores associated with symptoms improved with caregiver awareness (pain, p = 0.017; dyspnea, p = 0.048; appetite loss, p = 0.045). The percentage of depressed patients was smaller after 3 months in the group with caregivers aware of the prognosis (baseline to 3 months p = 0.028). Caregivers who did not understand their patients’ prognosis exhibited better existential well-being (p = 0.036), and the incidence of depression was lower in this group at 3 months (p = 0.024). Caregivers’ prognostic awareness may improve the quality of life and mood in patients with advanced cancer; however, this awareness may harm the quality of life and mood of the caregivers. These results may aid in developing in-depth interventions regarding prognosis for both patients and their caregivers.

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. 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. 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. 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.

Understanding the concept of a "good death" is crucial to end-of-life care, but our current understanding of what constitutes a good death is insufficient. Here, we investigated the components of a good death that are important to the general population, cancer patients, their families, and physicians.We conducted a stratified nationwide cross-sectional survey of cancer patients and their families from 12 hospitals, physicians from 12 hospitals and the Korean Medical Association, and the general population, investigating their attitudes toward 10 good-death components.Three components-"not be a burden to the family," "presence of family," and "resolve unfinished business"-were considered the most important components by more than 2/3 of each of the three groups, and an additional three components-"freedom from pain," "feel that life was meaningful," and "at peace with God"-were considered important by all but the physicians group. Physicians considered "feel life was meaningful," "presence of family," and "not be a burden to family" as the core components of a good death, with "freedom from pain" as an additional component. "Treatment choices' followed, "finances in order," "mentally aware," and "die at home" were found to be the least important components among all four groups.While families strongly agreed that "presence of family" and "not be a burden to family" were important to a good death, the importance of other factors differed between the groups. Health care providers should attempt to discern each patient's view of a good death.

Little is known about people’s attitudes toward death. We aimed to examine attitudes toward death and to investigate their associations with health status in various participant groups. We administered nationwide questionnaires to a total of 4,107 individuals including general Korean population, cancer patients, family caregivers, and physicians. Association of attitudes toward five aspects of dying and death—the ending of life, fearing death because it is painful, anticipating an afterlife, preparing to practice charity and being remembered—and physical, mental, social, and spiritual health status were also analyzed. Attitudes differed. Most (63.4%-76.2%) accepted that death is the ending of life, 45.6%-58.8% feared a painful death, 47.6%-55.0% anticipated an afterlife, 88.5%-93.0% expected to forgive, and 89.9%-94.1% expected to be remembered after death. The general population, cancer patients, and family caregivers had similar attitudes but had more positive attitudes than physicians on the ending of life, fearing a painful death, and anticipating an afterlife. Accepting death as the ending of life and fear of death pain were inversely associated with mental, social, spiritual, or general health status, but participants anticipating an afterlife, expecting to forgive, or expecting to be remembered showed better social, spiritual, or general health status. This nationwide study of various participant groups shows that attitudes toward dying and death were associated with mental, social, spiritual, or general health, but not physical health status. These data suggest that sensitive and skillful discussions of death and dying might contribute to peaceful end of life.

Advance care planning (ACP) in a healthy general population could improve the quality of care when a health problem arises.The purpose of this study was to evaluate the efficacy of video decision support aid in increasing the intention to document ACP in the general healthy population.In this randomized controlled trial, we enrolled 250 members of the general population (aged 20 years and older and determined to be healthy), stratified by age and sex. The intervention was a video that provided information about ACP and end-of-life care options such as cardiopulmonary resuscitation (CPR) and palliative care. An attention-control arm was given a booklet about advance directives. Primary outcome was a change in intention to document ACP. Secondary outcomes included the intention to refuse CPR at terminal status, CPR and palliative care knowledge score, and the Hospital Anxiety and Depression Scale.About 250 participants were randomly assigned, half to the video-assisted intervention group and half to the attention-control group. Within one week postintervention, the intention to document ACP was significantly higher in the video-assisted intervention arm (68.0% vs. 39.2%; P 0.001), and changes in the intention to document ACP were significantly greater in the video group than in the brochure group (P = 0.008; Δ = 14.4%). Palliative care knowledge score was also significantly increased in the video group (P = 0.036).A well-constructed video decision support intervention can increase the intention to document ACP in the general population that presumably had little opportunity to discuss ACP with physicians.

Background In this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care. Methods Development of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals. Results Factor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568–0.995) and discriminant (0.472–0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained. Conclusion This study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer. Electronic supplementary material The online version of this article (10.1186/s12904-018-0296-2) contains supplementary material, which is available to authorized users.