Background: A better understanding of differences between the preferences of the general public and the recommendations of healthcare providers with regard to end-of-life (EOL) care may facilitate EOL discussion.
Methods: The aim of this study was to clarify differences between preferences of the general public and recommendations of healthcare providers with regard to treatment, EOL care, and life-sustaining treatment (LST) based on a hypothetical scenario involving a patient with advanced cancer. This study comprised exploratory post-hoc analyses of “The Survey of Public Attitude Towards Medical Care at the End of life”, which was a population based, cross-sectional anonymous survey in Japan to investigate public attitudes toward medical care at the end of life. Persons living in Japan over 20 years old were randomly selected nationwide. Physicians, nurses, and care staff were recruited at randomly selected facilities throughout Japan. The general public data from the original study was combined to the data of healthcare providers in order to conduct exploratory post-hoc analyses. The preferences of the general public and recommendations of healthcare providers with regard to EOL care and LST was assessed based on the hypothetical scenario of an advanced cancer patient.
Results: All returned questionnaires were analyzed: 973 from the general public, 1039 from physicians, 1854 from nurses, and 752 from care staff (response rates of 16.2, 23.1, 30.9, and 37.6%, respectively). The proportion of the general public who wanted “chemotherapy or radiation”, “ventilation”, and “cardiopulmonary resuscitation” was significantly higher than the frequency of these options being recommended by physicians, nurses, and care staff, but the general public preference for “cardiopulmonary resuscitation” was significantly lower than the frequency of its recommendation by care staff.
Conclusion: Regarding a hypothetical scenario for advanced cancer, the general public preferred more aggressive treatment and more frequent LST than that recommended by healthcare providers.
Objectives: This study aimed to reveal the features of older adults’ advance care planning (ACP) discussions by identifying psychosocial factors related to their discussions in Japan, where people value family-centered decision making.
Methods: A qualitative study using in-depth interviews was conducted with 39 participants (aged =65 years) recruited from the outpatient department of a community hospital in Fukushima, Japan. Data were analyzed using the grounded theory approach.
Results: Through experiences of family caregiving, participants became aware of their own feelings about the end of life. Equal relationship with family members was important for lowering the threshold for having discussions. Some participants and their families in the same generation reached agreements on ACP; however, they were willing to yield to children’s decision making despite these discussions.
Discussions: These findings provide insights into the psychosocial factors in relation to ACP discussions and support for the role of ACP discussions in the family-centered decision-making culture.
Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
CONTEXT: There has been a growing consensus that parenteral nutrition and hydration is to be forgone in terminally ill patients with cancer. However, it remains unclear what the beliefs and perceptions of parenteral nutrition and hydration by the family members are.
OBJECTIVES: To clarify their beliefs and perceptions and to examine the relationships between the factors of family members, their beliefs and perceptions, and their overall satisfaction with the care the patient received at the place of death.
METHODS: This study was performed as a part of the cross-sectional anonymous nationwide survey of the bereaved family members of cancer patients in Japan.
RESULTS: In total, 1001 questionnaires were sent and 610 were returned. Among these, 499 were analyzed. Regarding the prevalence of beliefs and perceptions about parenteral nutrition and hydration, 'When a patient cannot eat enough, parenteral hydration is needed' was the highest (87.7%), followed by 'The opinions of medical staff are important in the issue of parenteral nutrition and hydration', 'Parenteral hydration serves as a substitute for oral hydration', and 'If I were a patient and could not eat enough, parenteral hydration would be needed' (85.1, 81.0, and 80.0%, respectively). We extracted two concepts as follows: 'Belief that parenteral nutrition and hydration are beneficial' and 'Perceived need for parenteral nutrition and hydration'. They were not identified as independent determinants of overall care satisfaction.
CONCLUSION: This study showed that beliefs and perceptions about parenteral nutrition and hydration were important in the family members in palliative care.
Advance care planning is spreading globally, but it is still a difficult task for healthy, community-dwelling Japanese residents. In Japan, it is called “life discussion,” and the first step is a discussion on goals, values, and preferences of medical care among family or other close persons, as knowledge on this topic is limited. This study aimed to explore the factors associated with the degree of engagement in life discussions among friends and family in depopulated areas. In 2 areas of Japan, 2466 individuals (aged 40-79 years) participated in this survey. Health/life habits, such as collecting health information and participating in some community activities, were significantly associated with the discussions more than attitude to medical/long-term care and community. Additionally, it was discussed how local governments could intervene to encourage advance care planning in depopulated areas. In conclusion, health habits or attitudes for care such as preference and desire for care among community-dwelling adults were associated with engaging in the discussions. It was proposed that local governments should motivate individuals to consider end-of-life experiences from a first-person perspective for creating advance care planning directives, and nurses could facilitate the discussion when death is imminent.
Background: Although recent attention to palliative care for patients with cardiovascular diseases has been increasing, there are no specific recommendations on detailed palliative care practices. We proceed on a discussion of the appropriateness and applicability of potential quality indicators for acute cardiovascular diseases according to our previous systematic review.
Methods: We created a multidisciplinary panel of 20 team members and 7 external validation clinicians composed of clinical cardiologists, a nutritionist, a physiotherapist, a clinical psychologist, a critical and emergent care specialist, a catheterization specialist, a primary care specialist, a palliative care specialist, and nurses. After crafting potential indicators, we performed a Delphi rating, ranging from “1 = minimum” to “9 = maximum”. The criterion for the adoption of candidate indicators was set at a total mean score of seven or more. Finally, we subcategorized these indicators into several domains by using exploratory factor analysis.
Results: Sixteen of the panel members (80%) were men (age, 49.5 ± 13.7 years old). Among the initial 32 indicators, consensus was initially reached on total 23 indicators (71.8%), which were then summarized into 21 measures by selecting relatively feasible time variations. The major domains were “symptom palliation” and “supporting the decision-making process”. Factor analysis could not find optimal model. Narratively-developed seven sub-categories included “presence of palliative care team”, “patient-family relationship”, “multidisciplinary team approach”, “policy of approaching patients”, “symptom screening and management”, “presence of ethical review board”, “collecting and providing information for decision-maker”, and “determination of treatment strategy and the sharing of the care team’s decision”.
Conclusion: In this study we developed 21 quality indicators, which were categorized into 2 major domains and 7 sub-categories. These indicators might be useful for many healthcare providers in the initiation and enhancement of palliative care practices for acute cardiovascular diseases in Japan.
BACKGROUND: The aging of populations is rapidly accelerating worldwide. Especially, Japan has maintained the highest rate of population aging worldwide. As countermeasures, the Japanese government prioritized the promotion of local comprehensive care systems and collaboration in medical care and social (long-term) care. Development of a system to connect medical and social services in the community is necessary for the increasing older people, especially for the people in the stage of end of life.
OBJECTIVE: This study aimed to assess the effect of a multidisciplinary end-of-life educational intervention program on confidence in inter-professional collaboration and job satisfaction among health and social care professionals.
DESIGN: a cluster-randomized controlled trial.
SETTING/PARTICIPANTS: Three professional groups (home care nurses, care managers, and heads of care workers) in an urban area participated in this trial.
INTERVENTION: We implemented a multidisciplinary end-of-life educational intervention program comprising two educational workshops and an educational booklet to support multidisciplinary care for end-of-life patients during the 7-month study period.
MAIN OUTCOME MEASURE: Confidence in improved interactions among professionals and job satisfaction were assessed with the Face-to-Face Cooperative Confidence Questionnaire and the Minnesota Satisfaction Questionnaire at T1 (before intervention) and T2 (7 months after the intervention).
RESULTS: In total, 291 professionals participated in this study (experimental group n = 156; control group n = 135). Multivariate regression analyses showed significant between-group increases on all of seven subscales in participants' face-to-face cooperative confidence over the study period; no effect was evident regarding job satisfaction.
CONCLUSIONS: A multidisciplinary end-of-life educational intervention program increased confidence in multidisciplinary collaboration among health and social care professionals.
BACKGROUND: Patients with advanced non-small cell lung cancer greatly care about where they will die. Most people in Japan preferred their location of death as their homes. But only 8.2% of patients with cancer spend their last days at home with palliative care in Japan. Many patients with cancer are still going to spend their last days at a hospital (81.7%).
OBJECTIVE: We examined the survival times of such patients according to their place of death; that is, whether they died at home, at a hospice, or at a hospital, and investigated patient characteristics.
RESULTS: Among the 313 patients recruited, 214 were analyzed in this study: 90, 49, and 75 received hospital-based, home-based, and hospice-based palliative care, respectively. The patients who died at a hospice exhibited significantly longer survival than those who died at hospital (estimated median survival time, 420 days [95% confidence interval [CI]: 325-612 days] versus 252 days [95% CI: 201-316 days]; P < .0001). The characteristics of patients did not differ significantly according to place of death.
CONCLUSIONS: Patients who died at a hospice or at home exhibited significantly longer survival than those who died at a hospital for advanced non-small cell lung cancer.
Background: Globally, the number of deaths is estimated to increase to 74 million per year by 2030. Place of death (PoD) is increasingly being recognized as an important aspect of end-of-life care. However, recent trends in PoD in Japan, one of the super-aged societies, are unknown.
Objective: To analyze trends in PoD in Japan over two decades.
Design: Population-based retrospective observational study.
Setting: All deaths reported in Japan, 1998-2017. PoD was defined as hospital, nursing home, or own home.
Results: All Japanese decedents (~22.6 million) over the past 20 years were analyzed. The proportion of hospital deaths was consistently high (>80%), with a significant decreasing trend from the mid-2000s. Although the proportion of deaths at home decreased in the first half of the study period, they later increased. There was a low proportion of deaths in nursing homes compared to other places of death; however, the proportion increased continually throughout the study period, particularly among women. In 2015, more women died in nursing homes than at home. Although the proportion of hospital deaths declined in the second half of the study period, their overall number continued to increase, reflecting an increase in total deaths in Japan.
Conclusions: This study highlighted rapid changes in trends in PoD in Japan, and the need to consider affordable end-of-life care in Japan as well as other countries with aging populations. The findings from this long-term epidemiological study provide important insights on this issue.
Purpose: Many patients with advanced cancer choose palliative chemotherapy. Considering its purpose of palliation and not treatment, it is important to consider the life of family caregivers. Family caregivers who experience bereavement undergo extreme stress, which is particularly high among patients’ spouses. The present study aims to clarify the experiences of the spouses of patients at the hospitals in Japan after the notification of palliative chemotherapy discontinuation until bereavement.
Method: We interviewed the spouses of 13 patients who received palliative chemotherapy using a semistructured interview guide. Each spouse was interviewed twice. The interviews were transcribed verbatim, and key concepts were identified using a grounded theory analytic approach.
Results: After the hospital's recommendation for palliative chemotherapy discontinuation, the spouses had “bewilderment over having to discontinue palliative chemotherapy” and experienced “difficulty in facing bereavement.” The spouses having “difficulty to give up hope for the patient's survival,” felt “bafflement over caregiving at the terminal stage,” which would be their responsibility in the future. Further, they had “hesitation in being honest to the patient” and were engaged in “knowing how to live with the patient until bereavement.“
Conclusion: Nurses need to encourage the patients and spouses to honestly express how they feel from the early stages of palliative chemotherapy. Furthermore, nurses should help spouses with how they face bereavement. This result may help prevent anticipatory grief, which may lead to excessive stress and emotional distress on the family caregivers.
Background: Palliative care (PC) is increasingly recognized as essential for oncology care, and several academic societies strongly recommend integrating oncology and palliative care (IOP) in daily practice. Similarly, the Japanese government encouraged the implementation of IOP through the Cancer Control Act of 2007; however, its detailed progress remains unclear. Therefore, this cross-sectional nationwide survey was conducted to investigate the current status and hospital executive physicians’ perception of IOP.
Methods: The questionnaire was developed based on IOP indicators with international consensus. It was distributed to executive physicians at all government-designated cancer hospitals (DCHs, n = 399) and matched non-DCHs (n = 478) in November 2017 and the results were compared.
Results: In total, 269 (67.4%) DCHs and 259 (54.2%) non-DCHs responded. The number of PC resources in DCHs was significantly higher than those in non-DCHs (e.g., full-time PC physicians and nurses, 52.8% vs. 14.0%, p < 0.001; availability of outpatient PC service =3 days per week, 47.6% vs. 20.7%, p < 0.001). Routine symptom screening was more frequently performed in DCHs than in non-DCHs (65.1% vs. 34.7%, p < 0.001). Automatic trigger for PC referral availability was limited (e.g., referral using time trigger, 14.9% vs. 15.3%, p = 0.700). Education and research opportunities were seriously limited in both types of hospitals. Most executive physicians regarded IOP as beneficial for their patients (95.9% vs. 94.7%, p = 0.163) and were willing to facilitate an early referral to PC services (54.7% vs. 60.0%, p < 0.569); however, the majority faced challenges to increase the number of full-time PC staff, and < 30% were planning to increase the staff members.
Conclusions: This survey highlighted a considerable number of IOP indicators met, particularly in DCHs probably due to the government policy. Further efforts are needed to address the serious research/educational gaps.
Background: Avoiding inappropriate care transition and enabling people with chronic diseases to die at home have become important health policy issues. Availability of palliative home care services may be related to dying at home.
Aim: after controlling for the presence of hospital beds and primary care physicians, we examined the association between availability of home palliative care services and dying at home in conditions requiring such services.
Design: Death certificate data in Japan in 2016 were linked with regional healthcare statistics.
Setting/participants: All adults (18 years or older) who died from conditions needing palliative care in 2016 in Japan were included.
Results: There were 922,756 persons included for analysis. Malignant neoplasm (37.4%) accounted for most decedents, followed by heart disease including cerebrovascular disease (31.4%), respiratory disease (14.7%) and dementia/Alzheimer’s disease/senility (11.5%). Of decedents, 20.8% died at home or in a nursing home and 79.2% died outside home (hospital/geriatric intermediate care facility). Death at home was more likely in health regions with fewer hospital beds and more primary care physicians, in total and per condition needing palliative care. Number of home palliative care services was negatively associated with death at home. The adjustment for home palliative care services disappeared in heart disease including cerebrovascular disease and reversed in respiratory disease.
Conclusion: Specialised home palliative care services may be suboptimal, and primary care services may serve as a key access point in providing baseline palliative care to people with conditions needing palliative care. Therefore, primary care services should aim to enhance their palliative care workforce.
BACKGROUND: Metastatic breast cancer (MBC) is generally incurable, but patients can survive longer than those with other cancer types. Treatment strategies for MBC are complex, and it is difficult to establish evidence of efficacy since symptoms and patient backgrounds vary markedly. Some patients struggle to decide where to receive end-of-life care, despite palliative care intervention, and some die in unexpected places. With the aim of ascertaining the best way to intervene on behalf of patients with end-stage breast cancer, we retrospectively examined interventions provided by our palliative care team. We investigated factors influencing the decision-making processes of patients with MBC regarding end-of-life care locations and where patients actually died.
METHODS: Clinical records of 44 patients with MBC, all Japanese women, who received palliative care interventions at our hospital, were retrospectively investigated. We examined factors, such as age, possibly impacting decision-making processes regarding the final location and actual place of death.
RESULTS: Thirty-five (80%) patients were able to decide where to receive end-of-life care, while the others were not. For these 35 patients, desired locations were the palliative care unit (77%), home palliative care (14%), and the hospital (9%). Age and recurrence-free survival (RFS) were factors influencing patients' decision-making processes (P = .030 and .044, respectively). Of the 35 patients, 25 (71%) were able to receive end-of-life care at their desired locations.
CONCLUSIONS: Young patients and those with short RFS struggled with making decisions regarding where to receive end-of-life care. Such patients might benefit from prompt introduction of advanced care planning.
Using the Ministry of Health, Labour and Welfare national data on perspectives toward medical care at the end of life, this study examined the current status of engagement in advance care planning (ACP) activities among physicians and nurses in Japan and associated factors. Only 28.7% of physicians and 27.6% of nurses answered that they were engaging their patients/clients in ACP. Multinomial regression analysis revealed that more frequent involvement in caring for dying patients was associated with ACP engagement for both physicians and nurses. Increased years of clinical practice experience and working in a hospital were associated with decreased likelihood of nurses' ACP engagement. Completion of training designed to promote patient self-determination at the end of life was associated with both physicians' and nurses' ACP engagement. It is recommended that health care professionals be encouraged to complete such training to promote patients' autonomy through ACP.
Background: The role of oxygen therapy in end-of-life care for patients with advanced cancer is incompletely understood. We aimed to evaluate the association between oxygen use and survival in patients with advanced cancer and low oxygen saturation in home care.
Methods: We conducted a retrospective cohort study at a primary care practice in suburban Tokyo. Adult patients in home care with advanced cancer demonstrating first low oxygen saturation (less than 90%) detected in home visits were consecutively included in the study. Cox proportional hazards regression was used to investigate the effect of oxygen use on overall survival and survival at home, adjusted for systolic blood pressure, decreased level of consciousness, dyspnea, oral intake, performance status, and cardiopulmonary comorbidity.
Results: Of 433 identified patients with advanced cancer, we enrolled 137 patients (oxygen use, n = 35; no oxygen use, n = 102) who developed low oxygen saturation. In multivariable analysis, the adjusted hazard ratio (HR) of oxygen use was 0.68 (95% confidence interval 0.39–1.17) for death and 0.70 (0.38–1.27) for death at home. In patients with dyspnea, the HR was 0.35 (0.13–0.89) for death and 0.33 (0.11–0.96) for death at home; without dyspnea, it was 1.03 (0.49–2.17) for death and 0.84 (0.36–1.96) for death at home.
Conclusions: Oxygen use was not significantly associated with survival in patients with advanced cancer and low oxygen saturation, after adjusting for potential confounders. It may not be necessary to use oxygen for prolongation of survival in such patients, particularly in those without dyspnea.
Background: Recently, there has been a growing interest in the use of artificial hydration therapy (AHT) for patients with terminal cancer. The Japanese Society for Palliative Medicine published the guideline for AHT in 2007, and it was revised in 2013 based on the concept of cancer cachexia.
Objectives: The purpose of this study was to evaluate the effects of AHT for patients with terminal cancer having overhydration symptoms based on this revised guideline.
Methods: This is a before-and-after study. We retrospectively analyzed 121 patients, of the 523 patients with terminal cancer who were admitted during the last 4 years, who were receiving “inappropriate hydration therapy.” We performed guideline-based AHT and examined the effects on the alleviation of hydration-related symptoms, quality of life (QOL), patient satisfaction, and the feeling of benefit from AHT using a numeric rating scale, European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire-C30, satisfaction scale, and benefit scale on day 7 ± 1 compared to those at baseline.
Results: Hydration-related symptoms (nausea: 32, abdominal pain/distention: 35, peripheral edema: 42, and dyspnea: 28 cases) were significantly improved after performing guideline-based AHT (5.35 ± 1.26 4.00 ± 1.51, P = .002; 5.41 ± 1.44 4.12 ± 1.52; P = .005; 5.16 ± 1.38 3.29 ± 1.66; P < .0001; and 5.24 ± 1.22 4.21 ± 1.53, P = .002, respectively). The general QOL scores, overall satisfaction, and feeling of benefit were also significantly improved (2.67 ± 1.21 3.98 ± 1.55, P < .0001; 2.25 ± 1.35 3.48 ± 1.44, P < .0001; and 3.12 ± 1.24 4.31 ± 1.38, P = .0001, respectively).
Conclusions: An appropriate AHT could alleviate overhydration-related symptoms and improve the QOL, patient satisfaction, and feeling of benefit.
OBJECTIVES: It is unclear whether patients with non-specific dyspnoea are suitable candidates for studies investigating the effectiveness of benzodiazepines against dyspnoea. The objective of this survey was to investigate suitable subjects for studies of benzodiazepines for cancer dyspnoea.
METHODS: A nationwide questionnaire survey was conducted among 536 Japanese-certified palliative care physicians. We randomly selected 268 physicians and inquired about their approach to dyspnoea management in patients with cancer, with and without anxiety, as follows: (1) Administration of a benzodiazepine. (2) Administration or titration of an opioid. We also asked them to consider their approach in the following situations: (1) Opioid-naïve. (2) Low-to-moderate baseline opioid dose. (3) High baseline opioid dose. We assessed the use of specific benzodiazepines separately.
RESULTS: Overall, 192 physicians responded to the questionnaire (71.6%). For patients without anxiety, the proportion of participants reporting that they frequently or very frequently 'administer a benzodiazepine' increased with baseline opioid dose (opioid-naïve: 5.2%, low-to-moderate: 11.5%, high: 26.0%). The proportion of participants reporting that they frequently or very frequently 'administer or titrate an opioid' decreased with baseline opioid dose (opioid-naïve: 83.3%, low-to-moderate: 73.4%, high: 41.1%). The pattern was similar for patients with anxiety, although more respondents said they prescribe benzodiazepine for these patients (naïve: 22.4%, low-to-moderate: 34.4%, high: 45.8%) and fewer prescribed an opioid. Alprazolam and lorazepam are frequently used.
CONCLUSION: Patients with anxiety or receiving a high baseline opioid dose could be potential candidates for future studies investigating the effectiveness of benzodiazepines against cancer dyspnoea.
Dementia is a major public health concern in ageing societies. Although the population of Japan is among the most aged worldwide, long-term trends in the place of death (PoD) among patients with dementia is unknown. In this Japanese nationwide observational study, we analysed trends in PoD using the data of patients with dementia who were aged =65 years and died during 1999–2016. Trends in the crude death rates and PoD frequencies were analysed using the Joinpoint regression model. Changes in these trends were assessed using the Joinpoint regression analysis in which significant change points, the annual percentage change (APC) and average APCs (AAPC) in hospitals, homes, or nursing homes were estimated. During 1999–2016, the number of deaths among patients with dementia increased from 3,235 to 23,757 (total: 182,000). A trend analysis revealed increased mortality rates, with an AAPC of 8.2% among men and 9.3% among women. Most patients with dementia died in the hospital, although the prevalence of hospital deaths decreased (AAPC: -1.0%). Moreover, the prevalence of nursing home deaths increased (AAPC: 5.6%), whereas the prevalence of home deaths decreased (AAPC: -5.8%). These findings support a reconsideration of the end-of-life care provided to patients with dementia.
OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices with parents.
STUDY DESIGN: A self-reported questionnaire was administered to assess frequency of withholding and withdrawing intensive care at the respondent's facility, the physician's degree of affirming various beliefs about end-of-life care that was compared to 7 European countries, their self-reported ACP practices and perceived barriers to ACP. Three neonatologists at all 298 facilities accredited by the Japan Society for Neonatal Health and Development were surveyed, with 572 neonatologists at 217 facilities responding.
RESULTS: At 76% of facilities, withdrawing intensive care treatments was "never" done, while withholding intensive care had been done "sometimes" or more frequently at 82% of facilities. Japanese neonatologists differed from European neonatologists regarding their degree of affirmation of 3 out of 7 queried beliefs about end-of-life care. In hospitals that were more likely to "sometimes" (or more often) withdraw treatments, respondents were less likely to affirm beliefs about doing "everything possible" or providing the "maximum of intensive care". Self-reported ACP practices did not vary between neonatologists based on their hospital's overall pattern of withholding or withdrawing treatments.
CONCLUSION: Among NICU facilities in Japan, 21% had been sometimes withdrawing LSI and 82% had been "sometimes" withholding LSI. Institutional treatment practices may have a strong association with physicians' beliefs that then affect end-of-life discussions, but not with self-reported ACP practices.
AIMS: To investigate the end-of-life nursing-care practice process in long-term care settings for older adults in Japan.
DESIGN: A qualitative study based on grounded theory developed by Corbin and Strauss.
METHODS: Sampling, interviewing and analysis were performed cyclically, with results for each stage used as the basis for data collection and next-stage analysis decisions. Semi-structured interviews were conducted from March 2015 - March 2019 with 22 nurses from eight long-term care settings. Analysis was performed using coding, constant comparison and emerging categories.
RESULTS: The core category, "guiding the rebuilt care community to assist the dying resident" comprised five categories: "assessing the resident's stage," "harmonizing care with the dying process," "rebuilding a care community," "helping community members care for the resident," and "encouraging community members to give meaning." The participants were the integral members of the care community, as well as guides who helped and encouraged the community.
CONCLUSION: Results revealed the holistic process of end-of-life nursing-care practice in Japan. Nurses aimed to allow long-term care residents to die as social human beings. Such practice requires nursing expertise, health-care skills and leadership qualities to build and serve care communities. Nurses must also consider residents' uncertainties and vulnerabilities as well as their cultural backgrounds.