RESUMO
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. METHODS: We conducted a secondary analysis of a nationwide bereaved family survey in Japan, analyzing data from 9123 family members of patients with cancer. Logistic regression analysis was conducted to explore how sociodemographic factors, health status, and perceived care for patients and families were associated with preparedness for bereavement. RESULTS: Of the 9123 families, 1338 (15.1%) were not prepared for bereavement. Factors associated with insufficient preparedness for bereavement (all p < 0.001) were found as follows: patients' spouses (OR = 2.54), receiving care in acute hospitals (OR = 1.83), worse psychological health status during caregiving (OR = 2.13), lower social support for family members (OR = 1.90), wrong patients' awareness of medical condition from family's perspective (OR = 1.75-2.12), family preference of more aggressive treatment rather than palliative care (OR = 1.71) or not sure (OR = 2.31), not wanting to know information about the patient's prognosis (OR = 1.64-1.77), end-of-life discussion with physician 1 month before patient's death (OR = 1.45), and late or early end-of-life discussions with physician and family (OR = 1.78-1.95). CONCLUSIONS: This study's results might assist clinicians in assessing and identifying families who are not prepared for bereavement; however, preparedness for bereavement may have been associated with other factors.
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Luto , Neoplasias , Assistência Terminal , Humanos , Pesar , Cuidados Paliativos , Neoplasias/terapia , Neoplasias/psicologia , MorteRESUMO
BACKGROUND: This study aimed to clarify the situation and evaluate the communication on anticancer treatment discontinuation from the viewpoint of a bereaved family, in reference to the concept of nudges. METHODS: A multi-center questionnaire survey was conducted involving 350 bereaved families of patients with cancer admitted to palliative care units in Japan. RESULTS: The following explanations were rated as essential or very useful: (i) treatment would be a physical burden to the patient (42.9%), (ii) providing anticancer treatment was impossible (40.5%), (iii) specific disadvantages of receiving treatment (40.5%), (iv) not receiving treatment would be better for the patient (39.9%) and (v) specific advantages of not receiving treatment (39.6%). The factors associated with a high need for improvement of the physician's explanation included lack of explanation on specific advantages of not receiving treatment (ß = 0.228, P = 0.001), and lack of explanation of 'If the patient's condition improves, you may consider receiving the treatment again at that time.' (ß = 0.189, P = 0.008). CONCLUSIONS: Explaining the disadvantages of receiving treatment and the advantages of not receiving treatment, and presenting treatment discontinuation as the default option were effective in helping patients' families in making the decision to discontinue treatment. In particular, explanation regarding specific advantages of not receiving treatment was considered useful, as they caused a lower need for improvement of the physicians' explanation.
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Luto , Comunicação , Família , Neoplasias , Humanos , Masculino , Feminino , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Neoplasias/terapia , Família/psicologia , Idoso , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto , Suspensão de Tratamento , Cuidados Paliativos/psicologia , Japão , Relações Médico-Paciente , Idoso de 80 Anos ou mais , Tomada de DecisõesRESUMO
Background: We investigated factors involved in decision-making support provided by physicians, nurses, pharmacists and medical and psychiatric social workers involved in cancer care. Materials & methods: A questionnaire survey on decision-making support was conducted. The level of clinician support was classified as 'supporting patients' 'decision-making process regarding cancer treatment', 'no support for patients' 'decision-making process regarding cancer treatment' or 'team-based support for patients' 'decision-making process regarding cancer treatment'. Results: Physicians estimated that 83.7% of patients made a cancer treatment decision within 1 week, but 45.4% of patients had difficulty making a decision. Conclusion: Medical personnel should support patients who have difficulty making decisions, establish a screening method to identify those needing support and develop a system providing decision-making support through interprofessional work.
We conducted a survey to investigate issues related to the level of decision-making support provided by physicians, nurses, pharmacists medical social workers and psychiatric social workers involved in cancer care. The physicians reported that 83.7% of patients with cancer chose a treatment plan within 1 week, although 45.4% of patients had difficulty making a decision. These decision-making difficulties arose at the time of diagnosis, when having difficulty controlling adverse events and when cancer metastasis or recurrence occurred. Some medical providers supported patients who had particular difficulty in choosing their cancer treatment, others provided no support, while a third group orchestrated a team to support them in their decision-making. To improve the quality of decision-making support, interprofessional work should be promoted and screening tools to identify those who need support should be established.
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Neoplasias , Médicos , Humanos , Pessoal de Saúde , Neoplasias/terapia , Atitude do Pessoal de Saúde , Corpo Clínico , Tomada de DecisõesRESUMO
PURPOSE: Hospital-based palliative care teams (HPCTs) are widespread internationally, but multicenter studies about their effectiveness, using patient-reported outcomes (PROs), are limited to Australia and a few other countries. We conducted a multicenter, prospective observational study in Japan to explore the effectiveness of the HPCTs using PROs. METHODS: Nationwide, eight hospitals participated in the study. We included newly referred patients for one month in 2021 and followed them for one month. We asked the patients to complete the Integrated Palliative Care Outcome Scale or the Edmonton Symptom Assessment System as PROs at the time of the intervention, three days later, and weekly after the intervention. RESULTS: A total of 318 participants were enrolled, of whom 86% were patients with cancer, 56% were undergoing cancer treatment, and 20% received the Best Supportive Care. After one week, the following 12 symptoms showed more than a 60% improvement from severe to moderate or less: vomiting (100%), shortness of breath (86%), nausea (83%), practical problems (80%), drowsiness (76%), pain (72%), poor sharing of feelings with family or friends (72%), weakness (71%), constipation (69%), not feeling at peace (64%), lack of information (63%), and sore or dry mouth (61%). Symptoms with improvement from severe/moderate to mild or less were vomiting (71%) and practical problems (68%). CONCLUSION: This multicenter study showed that HPCTs effectively improved symptoms in several severe conditions, as assessed by PROs. This study also demonstrated the difficulty of relieving symptoms in patients in palliative care and the need for improved care.
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Neoplasias , Cuidados Paliativos , Humanos , Dor , Neoplasias/terapia , Hospitais , VômitoRESUMO
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. This analysis included 14,171 bereaved family members (160 patients with malignant brain tumors). The quality of dying was examined using the good death inventory (GDI), a validated tool widely used in palliative care settings. RESULTS: Patients with malignant brain tumors were younger (p < 0.0001) and had a longer palliative care unit stay during their end-of-life (p < 0.0001) than others. The total GDI score was significantly lower in patients with malignant brain tumors than others (p < 0.0001). Five GDI items were significantly lower in the malignant brain tumor group than other cancer group: "Being able to stay in one's favorite place" (p = 0.03); "Trusting the physician" (p = 0.003); "Not being a burden to others" (p = 0.01); "Being independent in daily activities" (p = 0.01); and "Feeling that one's life is worth living" (p = 0.001). CONCLUSION: This study showed that the quality of dying of patients with malignant brain tumors was lower compared to other cancers, suggesting the need to review care for patients with malignant brain tumors based on their characteristics.
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Luto , Neoplasias Encefálicas , Neoplasias , Assistência Terminal , Atitude Frente a Morte , Humanos , Japão/epidemiologia , Cuidados Paliativos , Inquéritos e Questionários , Assistência Terminal/métodosRESUMO
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. RESULTS: A total of 1084 questionnaires (63.0%) were returned and we analyzed a total of 908 responses. In total, 38.0% of family members reported at least one family conflict during end-of-life care, and the most frequent family conflict was "about certain family members not pulling their weight" (23.5%). Multivariate linear analysis revealed family members who asserted their opinions (p < 0.001), family assessment device score (p < 0.001), worries about family finances during cancer treatment (p < 0.001), family members contacted after illness were helpful (p = 0.003), female patients (p = 0.03), and family with family relationship index ≤7 (p = 0.04) were positively associated with the outcome-family conflict (OFC) score. Proxy decision maker was selected by the patient (p = 0.003), people listened to families' worries or problems (p = 0.003), physician gave sufficient explanation (p = 0.003), living will before their illness (p = 0.038) and female bereaved family members (p = 0.046) were negatively associated with the OFC score. CONCLUSIONS: It may be important for health care providers to actively assess the possibility of family conflicts according to family relationships, such as a proxy decision maker having been selected by the patient.
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Luto , Neoplasias , Assistência Terminal , Estudos Transversais , Família , Conflito Familiar , Relações Familiares , Feminino , Humanos , Masculino , Neoplasias/terapia , Cuidados Paliativos , Inquéritos e QuestionáriosRESUMO
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. RESULTS: Out of 186 bereaved family caregivers, 71 (38.2%) responses were analyzed, among which 47% pre-loss and 15% post-loss responses suggested to be a high risk for major depressive disorder (MDD). Approximately 90% of family caregivers at a high risk for post-loss MDD were already at a high risk for pre-loss MDD. Even after adjustment of the background variables as covariates, the interaction effect between family caregivers' pre-loss depressive symptoms and resilience on post-loss depressive symptoms was observed (F = 7.29; p < 0.01). Moreover, pre-loss resilience was not associated with other bereavement outcome measures. CONCLUSIONS: Among family caregivers of patients with cancer in PCUs, 47% and 15% had high risk for MDD before and after bereavement, respectively. Moreover, pre-loss resilience mitigated post-loss depressive symptoms among family caregivers who had high risk for MDD before bereavement. However, considering the study's small sample size, further research is needed.
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Luto , Transtorno Depressivo Maior , Neoplasias , Cuidadores , Depressão , Família , Pesar , Humanos , Estudos ProspectivosRESUMO
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. Data on distressing events (unexpected death, bleeding) and received treatments (morphine prescriptions, continuous deep sedation, cardiopulmonary resuscitation) were also obtained. Bereaved caregiver depression was assessed 6 months or more after patient death via mail survey using the Patient Health Questionnaire-9 (PHQ-9). A multivariable logistic regression analysis was used to explore variables predicting bereaved caregiver depression. RESULTS: Of 1324 deceased patient-bereaved caregiver dyads, data were finally analyzed for 711 dyads. The proportion of probable depression (PHQ-9 scores ≥10) in bereaved caregivers was 13.6% (91/671; 95% confidence interval: 11.0-16.2). The multivariable logistic regression analysis showed that patient hyperactive delirium at PCU admission was significantly associated with the development of bereaved caregiver depression (odds ratio: 2.2, 95% CI: 1.2-3.8). Bereaved caregiver perceived low social support (OR: 4.7, 95% CI: 2.2-10.0) and low preparedness for death (OR: 4.5, 95% CI: 2.6-7.8) were also significantly associated with the development of depression. Other patient and bereaved caregiver variables had no association with depression. CONCLUSIONS: Hyperactive delirium in terminally ill cancer patients was associated with bereaved caregiver depression. The development of effective strategies to reduce delirium-related agitation and to provide educational interventions for caregivers may be needed.
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Luto , Delírio , Neoplasias , Cuidadores , Morte , Depressão , Humanos , Estudos Longitudinais , Neoplasias/terapiaRESUMO
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. RESULTS: In total, 1122 bereaved families answered (response rate: 66.7%). Of these, 297 reported the development of death rattle. The maximum intensity of death rattle evaluated by physicians and perceived by bereaved families was poorly correlated (Spearman correlation coefficient 0.188, P = 0.082). The optimal cut-off point of Back's score for detecting high-level distress was 1/2, with a low accuracy of prediction (area under the curve 0.62). More than 70% of bereaved families indicated suctioning reduced the intensity of death rattle, made patients comfortable and themselves relieved, whereas a similar proportion felt patients were in distress during suctioning. Families who felt suctioning was gently performed and discussed well whether to do suctioning with health care providers felt less needs for improvement. CONCLUSIONS: Bereaved family-perceived intensity of death rattle did not correlate to physician-evaluated intensity, and the intensity of death rattle itself seemed to poorly correlate to family distress. Gently performed suctioning based on sufficient discussion with families can help reduce family-perceived patient discomfort.
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Neoplasias , Assistência Terminal , Emoções , Família , Humanos , Japão , Cuidados Paliativos , Estudos Prospectivos , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
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: 48.2%). The Burden Index of Caregivers was used to identify the major burden on caregivers. To assess the associations of the patients' care needs level and other clinically relevant factors with the major burden, a multivariable-adjusted logistic regression model was used. RESULTS: The time-dependent burden was identified as a major burden. An adjusted model showed a nonlinear association between the care needs level and the time-dependent burden, in which the caregivers of the patients who required moderate care needs level had the highest time-dependent burden [adjusted odds ratio of none, mild, moderate, and severe care needs levels: 0.50 (95% confidence interval 0.07-2.12), 1.08 (0.43-2.57), 1.87 (1.01-3.52), and 1.00 (reference), respectively]. Additionally, older patients and younger caregivers were significantly associated with a time-dependent burden. CONCLUSION: The time-dependent burden was highest in caregivers at the moderate care needs level and younger caregivers. An imbalance between the demand and supply of care services may be improved by considering the clinical characteristics of both patients and caregivers.
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Serviços de Assistência Domiciliar , Neoplasias , Cuidadores , Estudos Transversais , Humanos , Seguro de Assistência de Longo Prazo , Neoplasias/terapia , Cuidados Paliativos , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
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. METHODS: A multicenter questionnaire survey was conducted involving bereaved families of cancer patients who received proportional or CDS based on a sedation protocol. Overall evaluation of sedation (satisfaction, family-perceived distress, appropriateness of timing, and patient distress) and 13-item family concerns, good death, satisfaction with care, depression, quality of care, unfinished business, and balance between symptom relief and maintaining communication were measured. RESULTS: Among the 2120 patients who died, 222 patients received a continuous infusion of midazolam. A sedation protocol was used in 147 patients, and questionnaires were sent to 124 families. A total of 78 responses were finally returned (proportional, 58 vs. CDS, 20). There were no significant differences in the overall evaluation, family concerns, total score of good death, satisfaction, depression, or balance between symptom relief and maintaining communication. On the other hand, some quality of care items, i.e., relationship with medical staff (P < 0.01), physical care by nurses (P = 0.04), and coordination and consistency (P = 0.04), were significantly better in the CDS group than in the proportional sedation group. Family-reported unfinished business was also better in the CDS group, with marginal significance. CONCLUSIONS: Family experience of CDS was not less favorable than proportional sedation, and actually rated more favorably for some elements of quality of care and unfinished business.
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Sedação Profunda , Neoplasias , Assistência Terminal , Sedação Profunda/métodos , Humanos , Hipnóticos e Sedativos/uso terapêutico , Midazolam/uso terapêutico , Neoplasias/terapia , Cuidados Paliativos/métodos , Inquéritos e Questionários , Assistência Terminal/métodosRESUMO
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. METHODS: This was a pre-planned secondary analysis of nationwide cross-sectional survey data from the bereaved family caregivers of patients with cancer who died at 286 institutions. The major measurements were the eight-item family caregiver-perceived Burden scale (comprising specialist access, uncertainty, and prolonged diagnosis), Good Death Inventory, and Patient Health Questionnaire 9. RESULTS: Of 27,591 survey responses, we analyzed 97 and 717 responses from family caregivers of patients with CUP and common cancer, respectively. The families of CUP patients scored significantly higher on all three burden subscales than those of common cancer patients (effect sizes: specialist access subscale, 0.3; uncertainty subscale, 0.66; and prolonged diagnosis subscale, 0.69; adjusted P < 0.01). Greater family burden was significantly associated with lower patient QOL and higher family depression. Burden was significantly associated with being a spouse, second opinion consultation, and diagnosis period of > 1 month. CONCLUSION: The family caregivers of CUP patients experience poor specialist access, greater uncertainty, and a prolonged diagnosis. They should be cared for from the initial stages to establish access to specialists, obtain an early diagnosis, and reduce uncertainty.
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Cuidadores , Neoplasias Primárias Desconhecidas , Estudos Transversais , Família , Humanos , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
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. We sent a questionnaire to 999 bereaved families of cancer patients who died in 164 palliative care units (PCUs) and analyzed the first SPC referral timing and how patients evaluated it. We defined SPC as outpatient or inpatient palliative care service comprising certified palliative care physicians, advanced-practice nurses, and multidisciplinary practitioners. Finally, 51.6% (n = 515) of all responses were analyzed. The SPC referral timing was evaluated as appropriate (26.1%), late or too late (20.2%), early or too early (1.2%), or none of these (52.5%). Of these, 32.3% reported that they were referred to an SPC when diagnosed with advanced or incurable cancer or during anti-cancer treatment, and 62.6% reported they were referred after anti-cancer treatment. Patient-perceived appropriateness of SPC referral timing was associated with their good death process. After excluding "none of these" responses, a significantly higher proportion of respondents who reported being referred to SPC at diagnosis and during anti-cancer treatment evaluated the response timing as appropriate, compared to those who reported being referred after anti-cancer treatment. Appropriate timing for SPC referrals relates to quality of death; findings suggest that appropriate timing is at the time of diagnosis or during anti-cancer treatment.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Neoplasias/terapia , Cuidados Paliativos , Encaminhamento e Consulta , Inquéritos e QuestionáriosRESUMO
Aspiration pneumonia (AP) is the leading cause of death among the elderly in Japan. The factors associated with the survival of elderly patients with AP are investigated in this retrospective observational study. Patients with AP over the age of 60 who were assessed for swallowing function in our hospital between April 2015 and March 2016 were eligible. Data on patients' body mass index (BMI), food consistency, and Karnofsky performance status were collected from medical records in hospital and again after recovery. Following hospital discharge, eligible patients were sent questionnaires containing information about their physical conditions, such as body weight and the Japanese version of the functional independence measure. Respondents were divided into two groups: those who died and those who survived, and the factors associated with patient mortality were investigated. There were 19 responses from 50 eligible patients, and seven patients died. The participants' average age was 81 years (SD 9.32). There were ten male participants (52.6%, p=1.00), and there were no significant differences in the mortality and survival groups. The most significant finding was that BMI was significantly lower in the patients who died (p=0.037, Cohen's d=1.10). Fisher's exact tests clearly demonstrated that patients with a BMI <19.9 had a higher mortality rate (p=0.017). Lower BMI may be associated with increased mortality in elderly patients with a history of AP. In general practice, BMI is simple to measure and may allow for an easy assessment of the risk of AP-related mortality.
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Pneumonia Aspirativa , Humanos , Masculino , Idoso , Idoso de 80 Anos ou mais , Pneumonia Aspirativa/etiologia , Estudos Retrospectivos , Fatores de Risco , Alta do Paciente , Japão/epidemiologiaRESUMO
OBJECTIVE: To derive and validate a risk scoring system for predicting major depressive disorder (MDD) and complicated grief (CG) among bereaved family members of patients with cancer that is feasible for clinical use. METHODS: We conducted a secondary analysis of two cross-sectional nationwide bereavement surveys in Japan. From a total of 17,312 bereaved family members of patients with cancer, 8618 and 8619 were randomly assigned to a derivation and a validation group. The Patient Health Questionnaire 9 (PHQ-9) and the Brief Grief Questionnaire (BGQ) were used to assess MDD (PHQ-9 score ≥ 10) and CG (BGQ score ≥ 8), respectively. We compared five models with potential predictive variables that could be easily obtained in daily practice and were included in the bereavement survey (i.e., sociodemographic data). RESULTS: The model which included variables such as the families' physical/mental health status and preparedness toward bereavement, in addition to their sociodemographic data, was considered modest for predicting the risk of both MDD and CG. The areas around the curve for MDD and CG were 0.74 (95% CI: 0.73-0.76) and 0.74 (95% CI: 0.72-0.75) and 0.78 (95% CI: 0.76-0.79) and 0.77 (95% CI: 0.76-0.79) in the derivation and validation groups, respectively. CONCLUSIONS: We developed a clinical risk score for predicting MDD and CG among bereaved family members of patients with cancer. However, further research is needed for external validation and assessment regarding its implementation in actual practice.
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Luto , Transtorno Depressivo Maior , Neoplasias , Estudos Transversais , Depressão , Família , Pesar , HumanosRESUMO
The study aim was to clarify the essential competencies for psychologists in palliative care teams. A nationwide, multicentre cross-sectional survey was conducted. A 32-item questionnaire assessing endorsement of potential competencies was completed by 70 patients and/or families, 101 consulting personnel, 747 members of palliative care teams and 203 mental health providers. All 32 competencies were judged as essential. Of the 32 items, 9 and 28 items were endorsed by >95% and 80% of participants, respectively. The most frequently endorsed essential competency was ability to coordinate with other professionals in palliative care teams. Some competencies considered essential seemed specific to oncology and medical settings. The results suggest the need for specific guidance for psychologists working in palliative care teams and the development of clinical oncology training programmes and/or systems for psychologists.
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Neoplasias , Estudos Transversais , Humanos , Neoplasias/terapia , Cuidados Paliativos , Equipe de Assistência ao Paciente , Encaminhamento e Consulta , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Known barriers to admission into inpatient hospice/palliative care units (PCUs) include poor accessibility and stringent conditions for admission. However, the exact criteria are unclear. The aim of this study was to clarify the actual conditions, possibilities and priorities for admission to PCU in Japan. METHODS: We conducted a nationwide, anonymous, self-administered questionnaire survey to the responsible physicians of all 251 PCUs in 2014. RESULTS: Responses were received from 190 institutions (response rate 76%). The most frequent condition for admission was 'either the patient or the family knows the diagnosis' [86%, 95% confidence interval (CI): 80-90]. For the conditions for admission to PCU, 10-40% fewer facilities answered that the patient's consent or understanding was required compared with those that answered the patient or family's consent was sufficient. Seventy-one percent (95% CI: 64-77) of PCUs answered that either the patient or a family member needed to agree to a do-not-resuscitate (DNR) policy. The factors most likely to result in refusal of admission to a PCU varied greatly. Ninety-four percent (95% CI: 90-97) of PCUs answered that patients who had undergone a long waiting time after applying for admission would be given higher priority, and approximately 50% of PCUs answered they gave priority to their outpatients and inpatients. CONCLUSIONS: The findings of this study should be used to modify the system so that appropriate palliative care can be provided to patients who wish to be admitted to PCU.
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Hospitais para Doentes Terminais , Pacientes Internados , Humanos , Japão , Cuidados Paliativos , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To evaluate the opioid-induced constipation burden in the subgroup of patients with lung cancer who participated in the observational Opioid-Induced Constipation in Patients with Cancer Pain in Japan (OIC-J) study. METHODS: The prospective, observational study, OIC-J, included 212 patients with various tumour types, 33% of whom had lung cancer. The incidence of opioid-induced constipation was evaluated using several diagnostic criteria, as well as the physician's diagnosis and patient's subjective assessment. Following initiation of opioids, patients recorded details of bowel movements (i.e. date/time, Bristol Stool Scale form, sensations of incomplete evacuation or anorectal obstruction/blockage and degree of straining) in a diary for 2 weeks. Relationships between patient characteristics and opioid-induced constipation onset and effects of opioid-induced constipation on quality of life were explored. RESULTS: In total, 69 patients were included in this post hoc analysis. The incidence of opioid-induced constipation varied (39.1-59.1%) depending on which diagnostic criteria was used. Diagnostic criteria that included a quality component or a patient's feeling of bowel movement as an evaluation item (i.e. Rome IV, physician's diagnosis, Bowel Function Index, patient's assessment) showed higher incidences of opioid-induced constipation than recording the number of spontaneous bowel movements alone. Opioid-induced constipation occurred rapidly after initiating opioids and had a significant impact on Patient Assessment of Constipation Symptoms total score (P = 0.0031). Patient baseline characteristics did not appear to be predictive of opioid-induced constipation onset. CONCLUSIONS: In patients with lung cancer, opioid-induced constipation can occur quickly after initiating opioids and can negatively impact quality of life. Early management of opioid-induced constipation, with a focus on quality-of-life improvement and patient's assessments of bowel movements, is important for these patients.
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Dor do Câncer/complicações , Neoplasias Pulmonares/complicações , Constipação Induzida por Opioides/complicações , Adulto , Idoso , Dor do Câncer/tratamento farmacológico , Feminino , Humanos , Incidência , Japão/epidemiologia , Estimativa de Kaplan-Meier , Neoplasias Pulmonares/tratamento farmacológico , Masculino , Pessoa de Meia-Idade , Constipação Induzida por Opioides/epidemiologia , Estudos Prospectivos , Qualidade de VidaRESUMO
In end-of-life care, rehabilitation for terminally ill cancer patients is inconsistently provided and rarely discussed. We sought to clarify the prevalence of unmet rehabilitation need for patients admitted to inpatient hospice/palliative care units as perceived by bereaved family members. We conducted a nationwide questionnaire survey of 1001 family members of cancer patients who died at inpatient hospices/palliative care units. For cancer patients who did not receive rehabilitation, we asked if family members perceived that the patient would have wanted rehabilitation intervention. Data were obtained from 416 respondents. Of these, 281 (67.5%) cases received no rehabilitation. The need for physical modalities was the most frequently reported (27.8%; 95% CI: 22.6-33.4), followed by relief of dyspnea (25.6%; 95% CI: 20.6-31.1) and treatment of edema (23.8%; 95% CI: 19.0-29.3). A non-negligible proportion of bereaved families reported unmet need for rehabilitation related to symptom management in inpatient hospices/palliative care units.
Assuntos
Luto , Hospitais para Doentes Terminais , Neoplasias , Assistência Terminal , Família , Humanos , Pacientes Internados , Avaliação das Necessidades , Neoplasias/psicologia , Neoplasias/reabilitação , Neoplasias/terapia , Cuidados Paliativos , Inquéritos e QuestionáriosRESUMO
PURPOSE: The aims of this study were to examine the prevalence of myoclonus, sweating, pruritus, hiccup, and vesical and rectal tenesmus, and to explore associated factors in patients with advanced cancer. METHODS: This multicenter prospective cohort study was conducted in 23 inpatient hospices/palliative care units in Japan from January to December 2017. The prevalence and characteristics of each symptom were assessed on admission and in the 3 days before death. We selected factors that might influence the occurrence of each symptom and investigated the association. RESULTS: A total of 1896 patients were enrolled. The prevalence of orphan symptoms rose from admission to the 3 days before death: myoclonus 1.3 to 5.3% (95% CI 0.9-1.9%/4.3-6.5%), sweating 1.8 to 4.1% (95% CI 1.3-2.6%/3.1-5.1%), hiccup 1.1 to 1.8% (95% CI 0.7-1.7%/1.2-2.6%), and tenesmus 0.7 to 0.9% (0.4-1.2%/0.5-1.5%). Prevalence of pruritus fell from 3.5 to 2.5% (95% CI 2.7-4.4%/1.8-3.4%). Sweating, pruritus, and hiccups persisted throughout the day in nearly half of the patients. Myoclonus was significantly associated with brain tumors, sweating with opioids and antipsychotics, pruritus with liver and biliary tract cancer, cholestasis and severe diabetes, hiccup with male gender, digestive tract obstruction, severe diabetes, and renal failure. Vesical tenesmus was associated with urinary cancer, antipsychotics, and anticholinergics and rectal tenesmus with pelvic cavity cancer. CONCLUSION: We found that orphan symptoms occurred in 0.5-5.0% of patients, increased over time except for pruritus, and persisted in half of the patients.