Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 230
Filtrar
1.
Support Care Cancer ; 30(1): 775-784, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34383113

RESUMO

PURPOSE: This study investigated the experience of palliative care physicians (PCPs) and their knowledge and recognition of immune checkpoint inhibitors (ICIs) and immune-related adverse events (irAEs) in clinical practice as well as the need to provide palliative care services for patients after ICI treatments. METHODS: A cross-sectional survey with self-administered questionnaires was conducted between February and April 2020. A total of 759 questionnaires were sent to PCPs in Japan. The changes in the PCPs' knowledge and recognition of ICIs and irAEs due to the increased experiences of treating patients after ICI treatments were analyzed. RESULTS: Four hundred ninety-two responses (64.8%) were analyzed. Only 15.0% of respondents had no experience of patients after ICI treatments, while 53.9% had experience of more than six patients. On the other hand, 40% of respondents had no experience of patients with suspected irAEs, while only 13.4% had experience of more than six patients. Respondents with more experience of patients after ICI treatments or those with suspected irAEs had extensive knowledge of ICIs and irAEs, were more confident in treating these patients, and tended to consider irAEs as therapeutic indications. The majority of respondents required guidelines and efficient consultation systems with oncologists. CONCLUSION: This study demonstrated that PCPs with experience had extensive knowledge and confidence of ICIs and irAEs and tended to recognize irAEs as therapeutic indications. The establishment of a more intimate relationship between PCPs and oncologists is important for providing better treatment for these patients.

2.
Support Care Cancer ; 30(1): 931-940, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34417885

RESUMO

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.

3.
J Cardiol ; 2021 Nov 20.
Artigo em Inglês | MEDLINE | ID: mdl-34815135

RESUMO

BACKGROUND: The decisional burden on caregivers in the end-of-life (EOL) care for patients with cardiovascular diseases (CVD) is unknown. We aimed to evaluate the frequency and circumstances of caregiver difficulties in decision-making during EOL care for CVD patients, its determinants, and associations with psychological distress in the bereaved caregivers. METHODS: We conducted a cross-sectional survey using a questionnaire for bereaved caregivers of CVD patients who had died in 10 tertiary care centers. We assessed their overall and situation-specific decision-making difficulties during EOL care. The questionnaire also covered the attitudes of patients, caregivers, and attending physicians during EOL care and the respondents' depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire). RESULTS: We enrolled 266 bereaved caregivers [median age, 65 (57-72) years; 38.4% male] of CVD patients. Overall, 28.9% of them experienced difficulties in decision-making. The most difficult decision-making situations involved informing the patient of the prognosis (18.2%), life-prolonging treatment (17.9%), and discontinuation of hydration and artificial nutrition (15.6%). Difficulties were associated with patient and/or caregiver factors (poor understanding of disease status and the patient's wishes, caregiver's emotional inability), physician factors (poor understanding of the patient's and/or caregiver's values, inadequate support for decision-making), and both (insufficient communication, conflict of opinions and wishes). Decision-making difficulties were associated with subsequent depression (20.5% vs. 10.3%, p=0.029) and complicated grief (27.0% vs. 9.0%, p<0.001) among bereaved caregivers. CONCLUSIONS: Approximately 30% of bereaved caregivers experienced decisional burdens during EOL care of CVD patients. The caregiver's decisional burdens were associated with subsequent psychological distress.

4.
Artigo em Inglês | MEDLINE | ID: mdl-34756955

RESUMO

CONTEXT: In recent times, advance care planning for patients' end-of-life care preferences has attracted much attention worldwide. OBJECTIVES: To develop the Readiness for Advance Care Planning (RACP) Scale. METHODS: Participants included 624 Japanese citizens who were registered with a web-based survey company as of February 2019. Items regarding the process of advance care planning (ACP) were developed based on a literature review and expert panel discussions. The expert panel included nine experts and practitioners in the field of end-of-life care. Construct validity, concurrent validity, internal consistency, and test-retest reliability were evaluated. RESULTS: Initially, 37 items were collected. Examination of the floor effect, item-total, good-poor analysis, and exploratory factor analysis yielded a five-factor model with 28 items. The goodness of fit of the model was GFI = 0.80, CFI = 0.91, and RMSEA = 0.08. The concurrent validity was statistically significant (rs = 0.26-0.45, ps < 0.001). Cronbach's alpha for the overall scale was .95. The corresponding values for the subscales ranged from 0.90 to 0.97. The intraclass correlation coefficients indicating test-retest reliability was 0.66 (p < 0.001) for the total scale and ranged from 0.52-0.65 for the five subscales. CONCLUSIONS: The validity and reliability of the scale were generally acceptable. The RACP is an appropriate instrument to evaluate the level of readiness for ACP behaviors among people of various generations at every health stage. More studies are needed to examine the clinical utility of the RACP, both nationally and internationally.

5.
Artigo em Inglês | MEDLINE | ID: mdl-34656654

RESUMO

CONTEXT: Palliative care is an essential component of comprehensive care for patients with critical illnesses. In Japan, little is known about palliative care in intensive care units (ICUs), and palliative care approaches are not widespread. OBJECTIVE: This study aimed to better understand the attitudes of physicians toward palliative care and the utilization and needs of specialized palliative care consultations in ICUs in Japan. METHODS: A nationwide, self-administered questionnaire was distributed ICU physician directors in all hospitals with ICUs. RESULTS: Questionnaires were distributed to 873 ICU physician directors; valid responses were received from 436 ICU physician director (50% response rate). Among the respondents, 94% (n = 411) felt that primary palliative care should be strengthened in ICUs; 89% (n = 386) wanted ICU physicians to collaborate with specialists, such as palliative care teams (PCTs); and 71% (n = 311) indicated the need for specialized palliative care consultations; however, only 38% (n = 166) actually consulted, and only 6% (n = 28) consulted more than 10 patients in the past year. Physicians most commonly consulted PCT for patients with serious end-of-life illness (24%) (n = 107), intractable pain (21%) (n = 92), and providing psychological support to family members (43%, n = 187). The potential barriers in providing primary and specialized palliative care included being unable to understand the patients' intentions (54%, n = 235), lack of knowledge and skills in palliative care (53%, n = 230), and inability to consult with PCTs in a timely manner (46%, n = 201). CONCLUSIONS: These data suggest a need for primary palliative care education in ICUs and improved access to specialized palliative care consultations.

6.
Artigo em Inglês | MEDLINE | ID: mdl-34686525

RESUMO

OBJECTIVES: Despite the recommendation that patients with cardiovascular disease (CVD) receive bereavement care, few studies have examined the psychological disturbances in bereaved caregivers. We examined the prevalence and determinants of depression and complicated grief among bereaved caregivers of patients with CVD. METHODS: We conducted a cross-sectional survey using a self-administered questionnaire for bereaved caregivers of patients with CVD who had died in the cardiology departments of nine Japanese tertiary care centres. We assessed caregiver depression and grief using the Patient Health Questionnaire-9 (PHQ-9) and Brief Grief Questionnaire (BGQ), respectively. The questionnaire also covered caregivers' perspectives toward end-of-life care and the quality of the deceased patient's death. RESULTS: A total of 269 bereaved caregivers (mean age: 66 (57-73) years; 37.5% male) of patients with CVD were enrolled. Overall, 13.4% of the bereaved caregivers had depression (PHQ-9 ≥10) and 14.1% had complicated grief (BGQ ≥8). Depression and complicated grief's determinants were similar (ie, spousal relationship, unpreparedness for the death, financial and decision-making burden and poor communication among medical staff). Patients and caregivers' positive attitudes toward life-prolonging treatment were associated with complicated grief. Notably, in caregivers with complicated grief, there was less discussion with physicians about end-of-life care. Caregivers who felt that the patients did not receive sufficient treatment suffered more frequently from depression and complicated grief. CONCLUSIONS: Approximately 15% of bereaved caregivers of patients with CVD suffered from depression and complicated grief. Cardiologists should pay particular attention to caregivers with high-risk factors to identify those likely to develop depression or complicated grief.

7.
Healthcare (Basel) ; 9(9)2021 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-34574968

RESUMO

The number of deaths of older adults in long-term care settings will increase with the aging population. Nurses and care workers in these settings face various challenges in providing end-of-life care, and interventions for quality end-of-life care may be useful. This feasibility study aims to explore the preliminary effect and acceptability of an intervention named the EOL Care Tool to improve end-of-life care in long-term-care facilities. We conducted a single-arm quasi-experimental study using mixed methods. This tool consisted of multiple components: professionalized lectures, newly developed structured documents, regular conferences regarding end-of-life care, and educational support from administrators. Twenty-four nurses and fifty-five care workers employed in a long-term care facility participated. For nurses, improvement in attitudes toward end-of-life care (p < 0.05) and interdisciplinary collaboration (p < 0.05) were shown quantitatively. Regarding acceptability, nurses and care workers evaluated the tool positively except for the difficulty of using the new documents. However, qualitative results showed that care workers felt the reluctance to address the work regarding end-of-life care. Therefore, a good preliminary effect and acceptability for nurses were indicated, while acceptability for care workers was only moderate. Revision to address the mentioned issues and evaluation of the revised tool with a more robust research design are required.

8.
J Hosp Palliat Nurs ; 2021 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-34550913

RESUMO

This observational, controlled study explored the effects of bathing on the physical and psychological aspects of terminal cancer patients on a palliative care ward. With nurses' assistance, the patients evaluated and recorded the severity of their symptoms at 10:00 AM, 30 minutes after initial bathing, and at 5:00 PM. The bathing care was provided as routine care according to the patients' wishes. Twelve symptoms were measured using 9 items (numbers 1-9) from the Edmonton Symptom Assessment System-Revised Japanese version and 3 items from the Cancer Fatigue Scale. Outcomes were compared between bathing days and nonbathing days (control) and between before and after bathing. Of the 57 bathers, data were available for both bathing days and nonbathing days for 42 bathers. In the comparison between bathing and nonbathing days, tiredness was significantly improved (effect size [ES], 0.35; P = .02). On the basis of the pre-post bathing comparison, 6 symptoms, namely, tiredness (ES, 0.40; P < .01), lack of appetite (ES, 0.36; P = .01), decreased well-being (ES, 0.33; P = .01), anxiety (ES, 0.36; P = .01), pain (ES, 0.31; P = .02), and depression (ES, 0.30; P = .02), were significantly improved. Bathing in a tub effectively improves tiredness and might be effective for distressing symptoms in end-of-life cancer patients.

9.
Support Care Cancer ; 2021 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-34542734

RESUMO

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.

10.
Psychooncology ; 2021 Aug 03.
Artigo em Inglês | MEDLINE | ID: mdl-34343380

RESUMO

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.

11.
Psychooncology ; 2021 Aug 28.
Artigo em Inglês | MEDLINE | ID: mdl-34453463

RESUMO

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.

12.
Tohoku J Exp Med ; 254(3): 155-161, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-34219104

RESUMO

Management of nausea is an important dimension of palliative care. The first choice for treating nausea is antiemetics, but their efficacy is inadequate. Acupressure intervention for nausea in cancer patients has been studied as a non-pharmacological therapy, and appears to have had some effect. However, such a therapy has not been well reviewed in patients with terminal cancer. The purpose of this study was to clarify the feasibility of acupressure intervention and examine its safety and preliminary efficacy. We recruited cancer patients that fulfilled the eligibility criteria and were admitted to the palliative care unit, from August 2018 to February 2019, in Tohoku University Hospital, Japan. We conducted a longitudinal assessment of acupressure intervention in a single arm. We identified the patient's research accomplishments and evaluated possible fainting due to the vagal reflex and symptom severity. Descriptive statistics were used to calculate the completion rate for the feasibility and Wilcoxon signed-rank tests to compare the average of continuous variables for the safety and efficacy. Twelve patients participated in this study and completed the procedure. Their average age was 70 years (SD = 9.3), and the most common primary cancer sites were the rectum and pancreas. The blood pressure and pulse rate did not drop sharply. Four patients exhibited decreased nausea but there was no statistically significant difference (P = 0.5). We suggested that acupressure has high feasibility and safety, as an intervention for patients with terminal cancer. However, no significant differences were observed regarding its effect on nausea.

13.
Jpn J Clin Oncol ; 51(9): 1437-1443, 2021 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-34184056

RESUMO

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.


Assuntos
Hospitais para Doentes Terminais , Pacientes Internados , Humanos , Japão , Cuidados Paliativos , Inquéritos e Questionários
14.
Artigo em Inglês | MEDLINE | ID: mdl-34118370

RESUMO

CONTEXT: Family functioning is a modifiable factor associated with major depressive disorder (MDD) and complicated grief (CG) among the bereaved families of patients with advanced cancer; however, the evidence regarding this association is limited. OBJECTIVES: We aimed to explore the association of family functioning with possible MDD and CG among the bereaved families of patients with advanced cancer who died in palliative care units. METHODS: This study is a part of the J-HOPE4 study, a nationwide cross-sectional multi-purpose questionnaire survey conducted in 2018. We recruited potential participants from 164 inpatient palliative care units in Japan and assessed family functioning with the Family Relations Index (FRI). Family functioning was classified into three categories (Well-functioning: FRI ≥ 10, Intermediate: FRI = 8〜9, Dysfunctioning ≤ 7). The Patient Health Questionnaire 9 (PHQ-9) and the Brief Grief Questionnaire (BGQ) were used to assess depression (PHQ-9 score ≥ 10) and complicated grief (BGQ score ≥ 8), respectively. Multinomial logistic regression analysis was performed with possible MDD and CG and factors the family functioning. RESULTS: A total of 615 questionnaires were returned, of which 54.0 % (n = 510) age of questionnaires could be used. Although family functioning was associated with possible MDD (21.1% in Dysfunctional; 9.3% in Well-functional, P = 0.016), it was not associated with possible CG (14.8% in Dysfunctional; 9.9% in Well-functional, P = 0.929). Possible MDD and CG were significantly associated with deteriorated family relationships (OR:8.29; P = 0.004 and OR:34.00; P < 0.001, respectively), and consulting with health care providers about their concerns (OR:0.23; P = 0.003 and OR:0.23; P = 0.003, respectively). CONCLUSIONS: Family function was affected by post-bereavement possible MDD and not by CG. Our findings suggest that health care providers can identify risk factors for MDD among bereaved, dysfunctional family members.

15.
Jpn J Clin Oncol ; 51(8): 1334-1338, 2021 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-34117492

RESUMO

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 , Determinação de Necessidades de Cuidados de Saúde , Neoplasias/psicologia , Neoplasias/reabilitação , Neoplasias/terapia , Cuidados Paliativos , Inquéritos e Questionários
16.
Support Care Cancer ; 29(12): 7805-7813, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34169330

RESUMO

PURPOSE: This study aimed to (1) describe characteristics of aggressive care at the end of life (EOL) and (2) identify factors associated with specialized palliative care use (SPC) and aggressive care at the EOL among Japanese patients with advanced cancer. METHODS: This single-center, follow-up cohort study involved patients with advanced cancer who received chemotherapy at Tohoku University Hospital. Patients were surveyed at enrollment, and we followed clinical events for 5 years from enrollment in the study. We performed multivariate logistic regression analysis to identify independent factors related to SPC use and chemotherapy in the last month before death. RESULTS: We analyzed a total of 135 patients enrolled between January 2015 and January 2016. No patients were admitted to the intensive care unit, and few received resuscitation or ventilation. We identified no factors significantly associated with SPC use. Meanwhile, younger age (20-59 years, odds ratio [OR] 4.10; 95% confidence interval [CI] 1.30-12.91; p = 0.02) and no receipt of SPC (OR 4.32; 95% CI 1.07-17.37; p = 0.04) were associated with chemotherapy in the last month before death. CONCLUSION: Younger age and a lack of SPC were associated with chemotherapy at the EOL in patients with advanced cancer in Japan. These findings suggest that Japanese patients with advanced cancer may benefit from access to SPC.


Assuntos
Neoplasias , Assistência Terminal , Adulto , Estudos de Coortes , Morte , Seguimentos , Humanos , Japão , Pessoa de Meia-Idade , Neoplasias/terapia , Cuidados Paliativos , Estudos Retrospectivos , Adulto Jovem
17.
J Adv Nurs ; 77(9): 3745-3758, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-34028846

RESUMO

This study examined differences in sociodemographic characteristics and the achievement of a good death between cancer patients who live alone and those who do not live alone prior to death in different settings. Secondary analysis of data collected across two cross-sectional self-reported questionnaire surveys was undertaken. The participants were bereaved family members of cancer patients who had died in palliative care units (PCUs), acute hospitals or homes. We stratified the data by the place of death and examined the differences in sociodemographic characteristics to determine the relationship between cancer patients achieving a "good death" and whether they were living alone. The data were collected through 15,949 surveys. On the Good Death Inventory, significantly higher total scores emerged for cancer patients who were living alone than for those who not living alone in PCUs (effect size [ES] = 0.11, Student's t-test: p < .0001), but not in acute hospitals (ES = -0.03, p = 0.74) or home care services (ES = 0.02, p = 0.86). Cancer patients who were living alone were more likely to have been female, been older and have earned a lower annual income than those who were not living alone. Thus, among those who had received specialized palliative care, there was no difference in the quality of palliative care between cancer patients who were or were not living alone.


Assuntos
Luto , Neoplasias , Assistência Terminal , Estudos Transversais , Família , Feminino , Humanos , Cuidados Paliativos , Inquéritos e Questionários
18.
J Pain Symptom Manage ; 62(4): 796-804, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33848568

RESUMO

CONTEXT: Terminal dyspnea in dying cancer patients is frequent and distressing, and the impact extends to their families. Families are often involved in providing care for terminal dyspnea. OBJECTIVES: This study aimed to describe various care strategies for terminal dyspnea in cancer patients hospitalized in palliative care units (PCUs), evaluate families' satisfaction with care for terminal dyspnea, and explore determinants contributing to families' satisfaction. METHODS: A nationwide, cross-sectional survey was conducted using a self-reported questionnaire among bereaved families of cancer patients who died in PCUs. The questionnaire consisted of questions on the perceptions of care offered to patients with terminal dyspnea and their families, satisfaction with care for terminal dyspnea, family-perceived intensity of terminal dyspnea, use of oxygen, and background data of patients and families. RESULTS: In total, 533 participants (response rate = 54%) returned the completed questionnaires, and 231 reported that their loved one had experienced terminal dyspnea. Dedicated and compassionate care was perceived by 60%-89% of the participants as the strategy provided for patients. Care for family members was perceived by 58%-69% of the participants. Perception of dedicated and compassionate care for patients and that of care for family members were significantly associated with high satisfaction (odds ratio, 95% confidence interval: 8.64, 3.85-19.36 and 15.37, 5.00-47.25, respectively). CONCLUSION: Dedicated and compassionate care may be the essential part of the care for terminal dyspnea. Dedicated and compassionate care for patients and care for family members have a potential of improving the care satisfaction among family caregivers.


Assuntos
Luto , Neoplasias , Assistência Terminal , Estudos Transversais , Dispneia/terapia , Família , Humanos , Neoplasias/terapia , Cuidados Paliativos , Satisfação do Paciente , Satisfação Pessoal , Inquéritos e Questionários , Doente Terminal
19.
Palliat Support Care ; : 1-7, 2021 Mar 05.
Artigo em Inglês | MEDLINE | ID: mdl-33666153

RESUMO

OBJECTIVES: The goal of palliative and supportive care is to improve patients' quality of life (QoL). Patient-reported outcome measures (PROMs) are the gold standard for the assessment of QoL and symptoms; however, when self-reporting is complicated, PROMs are often substituted with proxy-reported outcome measures, such as clinician-reported outcome measures. The objective of this study was to assess the validity and reliability of the Japanese version of the Integrated Palliative care Outcome Scale (IPOS) for staff (IPOS-Staff). METHODS: This multicenter, cross-sectional observational study was conducted concurrently with the validation of the IPOS for patients (IPOS-Patient). Japanese adult patients with cancer and their staff were recruited. We assessed the characteristics of the patients and staff members, missing values, prevalence, and total IPOS scores. For the analysis of criterion validity, intra-rater, and inter-rater reliability, we calculated intraclass correlations (ICCs). RESULTS: One hundred and forty-three patients completed the IPOS-Patient, and 79 medical staff members completed the IPOS-Staff. The most common missing values from IPOS-Staff were Family Anxiety (3.5%) and Sharing Feelings (3.5%). Over half of the patients scored themselves moderate or worse for Poor Mobility, Anxiety, and Family Anxiety, while staff members scored patients moderate or worse for Weakness, Anxiety, and Family Anxiety. For criterion validity (patient-staff agreement) as well as intra-rater and inter-rater reliability, ICCs ranged from 0.114 (Sharing Feelings) to 0.826 (Nausea), 0.720 (Anxiety) to 0.933 (Nausea), and -0.038 (Practical Problems) to 0.830 (Nausea), respectively. SIGNIFICANCE OF RESULTS: The IPOS-Staff is easy to respond to; it has fair validity and reliability for physical items but poor for psycho-social items. By defining the context and objectives of its use and interpretation, the IPOS-Staff can be a useful tool for measuring outcomes in adult patients with cancer who cannot complete self-evaluations.

20.
J Pain Symptom Manage ; 62(3): e120-e129, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-33757891

RESUMO

CONTEXT: Cardiopulmonary resuscitation is one of the most important end-of-life care decisions. However, the experience of bereaved families during code status discussions is not well documented. OBJECTIVE: The aims of this study were to describe the degree of emotional distress of bereaved families when discussing code status, identify their perceived areas for improvement and determine associated factors. METHODS: This study is part of a nationwide post-bereavement survey, the Japan Hospice and Palliative care Evaluation 3 (J-HOPE3) study. Questionnaires were sent to the relatives of cancer patients who had died in palliative care units in Japan in 2014. RESULTS: From an analysis of 338 questionnaires, 37% of families reported high emotional distress during code status discussions and 32% reported a need for improvement. Multiple logistic regression analyses revealed the following were associated with high-level distress: the family had hoped for the miraculous and spontaneous recovery of the patient (odds ratio [OR] 2.4, 95% confidence interval [CI] 1.31-4.43, P = 0.0049), the family felt they could not voice their opinion about Cardiopulmonary resuscitation (OR 2.07, CI 1.12-3.81, P = 0.02), or the physician failed to adapt the explanation to the family's preparation level (OR 0.36, CI 0.18-0.68, P = 0.0015). Factors identified for improvement were: holding discussions in a relaxing atmosphere conducive to questioning (OR 0.36, CI 0.16-0.80, P = 0.012), and ensuring the physician adapted the explanation to the family's preparation level (OR 0.47, CI 0.23-0.96, P = 0.037). CONCLUSION: We recommend the development of educational programs for code status discussions to improve the experience of bereaved family members.


Assuntos
Luto , Hospitais para Doentes Terminais , Neoplasias , Médicos , Assistência Terminal , Comunicação , Família , Humanos , Pacientes Internados , Japão , Neoplasias/terapia , Cuidados Paliativos , Inquéritos e Questionários , Doente Terminal
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...