Associations between palliative-care consultations and end-of-life quality in cancer patients' last 6 months.

PURPOSE: Improving end-of-life (EOL) quality for terminally ill cancer patients is crucial. However, associations between hospice/palliative care and EOL quality, as perceived by patients, are underreported. We aimed to examine the impact of palliative care consultative services on the EOL quality during cancer patients' last six months. METHODS: In this prospective, longitudinal study, 174 cancer patients were divided into a palliative care consultative services group (n = 65) or a non palliative care consultative services group (n = 109). The impact of palliative care consultative services on EOL quality, assessed using the Quality of Dying and Death (QODD) scale at the first and last assessments within the patients' last six months, was analyzed by linear regression with generalized estimating equations, adjusting for covariates. RESULTS: Cancer patients received palliative care consultative services a median of 34.0 days before death. There were significant main effects of groups, indicating that patients receiving palliative care consultative services had better QODD total scores (ß [95% confidence interval] = 2.12 [0.32,3.93], p = .021), death preparation (3.80 [1.71,5.89], p < .001), and treatment preferences than the reference group (3.27 [0.90,5.64], p = .007). No group differences were found in other dimensions, including symptom and personal care, whole person concern, and time with family. CONCLUSION: Palliative care consultative services significantly improved cancer patients' perceptions of death preparation, treatment preferences, and the QODD total score. Therefore, healthcare professionals should offer palliative care consultative services to cancer patients, initiate early referrals for such care, and implement effective and individualized interventions to enhance EOL quality.

Family Members' Feedback on the "Quality of Death" of Adult Patients Who Died in Intensive Care Units and the Factors Affecting the Death Quality: A Systematic Review and Meta-Analysis.

Intensive care units (ICUs) are designed for critically ill patients who often experience high mortality rates owing to the severity of their conditions. Although the primary goal is patient recovery, it is crucial to understand the quality of death in the ICU setting. Nevertheless, there is a notable lack of systematic reviews on measured death quality and its associated factors. This study aims to conduct a quantitative synthesis of evidence regarding the quality of death in the ICU and offers a comprehensive overview of the factors influencing this quality, including its relationship with the post-intensive care syndrome-family (PICS-F). A thorough search without any language restrictions across MEDLINE, CINAHL, PsycINFO, and Igaku Chuo Zasshi databases identified relevant studies published until September 2023. We aggregated the results regarding the quality of death care for patients who died in the ICU across each measurement tool and calculated the point estimates and 95% confidence intervals. The quantitative synthesis encompassed 19 studies, wherein the Quality of Dying and Death-single item (QODD-1) was reported in 13 instances (Point estimate: 7.0, 95% CI: 6.93-7.06). Patient demographic data, including age and gender, as well as the presence or absence of invasive procedures, such as life support devices and cardiopulmonary resuscitation, along with the management of pain and physical symptoms, were found to be associated with a high quality of death. Only one study reported an association between quality of death and PICS-F scores; however, no significant association was identified. The QODD-1 scale emerged as a frequently referenced and valuable metric for evaluating the quality of death in the ICU, and factors associated with the quality of ICU death were identified. However, research gaps persist, particularly regarding the variations in the quality of ICU deaths based on cultural backgrounds and healthcare systems. This review contributes to a better understanding of the quality of death in the ICU and emphasises the need for comprehensive research in this critical healthcare domain.

The Quality of Dying in Frail Institutionalized Older Patients After Nonoperative and Operative Management of a Proximal Femoral Fracture: An In-Depth Analysis.

Proximal femoral fractures in frail patients have a poor prognosis. Despite the high mortality, little is known about the quality of dying (QoD) while this is an integral part of palliative care and could influence decision making on nonoperative- (NOM) or operative management (OM). To identify the QoD in frail patients with a proximal femoral fracture. Data from the prospective FRAIL-HIP study, that studied the outcomes of NOM and OM in institutionalized older patients ≥70 years with a limited life expectancy who sustained a proximal femoral fracture, was analyzed. This study included patients who died within the 6-month study period and whose proxies evaluated the QoD. The QoD was evaluated with the Quality of Dying and Death (QODD) questionnaire resulting in an overall score and 4 subcategory scores (Symptom control, Preparation, Connectedness, and Transcendence). In total 52 (64% of NOM) and 21 (53% of OM) of the proxies responded to the QODD. The overall QODD score was 6.8 (P25-P75 5.7-7.7) (intermediate), with 34 (47%) of the proxies rating the QODD 'good to almost perfect'. Significant differences in the QODD scores between groups were not noted (NOM; 7.0 (P25-P75 5.7-7.8) vs OM; 6.6 (P25-P75 6.1-7.2), P = .73). Symptom control was the lowest rated subcategory in both groups. The QoD in frail older nursing home patients with a proximal femoral fracture is good and humane. QODD scores after NOM are at least as good as OM. Improving symptom control would further increase the QoD.

The quality of death and dying of patients with advanced cancer in hospice care in Uganda and Kenya.

OBJECTIVES: Minimal information is available about the quality of dying and death in Uganda and Kenya, which are African leaders in palliative care. We investigated the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya. METHODS: Observational study with bereaved caregivers of decedents (Uganda: n = 202; Kenya: n = 127) with advanced cancer who had received care from participating hospices in Uganda or Kenya. Participants completed the Quality of Dying and Death questionnaire and a measure of family satisfaction with cancer care (FAMCARE). RESULTS: Quality of Dying and Death Preparation and Connectedness subscales were most frequently rated as good to almost perfect for patients in both countries (45.5% to 81.9%), while Symptom Control and Transcendence subscales were most frequently rated as intermediate (42.6% to 60.4%). However, 35.4% to 67.7% of caregivers rated overall quality of dying and overall quality of death as terrible to poor. Ugandan caregivers reported lower Preparation, Connectedness, and Transcendence (p < .001). Controlling for covariates, overall quality of dying was associated with better Symptom Control in both countries (p < .001) and Transcendence in Uganda (p = .010); overall quality of death, with greater Transcendence in Uganda (p = .004); and family satisfaction with care, with better Preparation in Uganda (p = .004). SIGNIFICANCE OF RESULTS: Findings indicate strengths in spiritual and social domains of the quality of dying and death in patients who received hospice care in Uganda and Kenya, but better symptom control is needed to improve this outcome in these countries.

Translation and psychometric evaluation of the Persian version of "good death inventory- short Form" from the perspective of family-members of cancer patients.

INTRODUCTION: Achieving good death is among the objectives of palliative care in patients with cancer. There should be an instrument for evaluating the quality of palliative care provided by family members at the end of life. This study was done to assess the psychometric properties of good death inventory- short form according to the perspective of family of patients with cancer. METHOD: This methodological study was done in 2022 at two hospitals in Tehran. The translation was done via forward-backward method. Face validity was examined through cognitive interviewing with 10 family members. The content validation, were used by assessment the opinions of 10 palliative care specialists. The construct validity was explored through exploratory factor analysis and examination of convergent validation with care evaluation scale 2.0, as well as inspection of correlation by answering two general questions of satisfaction with treatment and end of life quality of life. The scale's reliability, internal consistency was calculated using Cronbach's alpha coefficient and stability via test-retest. RESULTS: Overall, 204 family members of patients with cancer were included. In the exploratory factor analysis, three factors of peace, hope, and value as well as quality of care were extracted with cumulative variance of 41.8%.A significant and suitable correlation between the total scores of the participants Good death inventory-short form and care evaluation scale2.0 (r = 0.459, P < 0.001) and general satisfaction with end-of-life care (r = 0.423, p < 0.001) as well as the patient's general quality of life (r = 0.539, p < 0.001). The Cronbach's alpha coefficient for the questionnaire was found 0.842, and the stability was confirmed with Intra cluster correlation coefficient = 0.851. CONCLUSION: the Persian version of good death inventory-short form is a valid and reliable questionnaire which can investigate the factors associated with good death according to patients' family members' perspective.

A systematic review of instruments measuring the quality of dying and death in Asian countries.

PURPOSE: This study aimed to systematically identify, appraise, and summarize the psychometric properties of instruments used to measure the quality of dying and death in Asian countries. METHODS: The Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) was closely followed. The literature was searched using the following keywords and their synonyms: "death and dying," "measurement," and "Asian country" in CINAHL, PubMed, PsycInfo, Web of Science, and Cochrane Library from inception to April 2021. Two reviewers independently screened titles and abstracts and reviewed the full text. Two other reviewers independently assessed the quality of the identified studies in three steps: methodological quality evaluation, good measurement properties evaluation, and quality of evidence evaluation. RESULTS: This review retrieved 37,195 studies, of which seven were finally included. Four instruments that assessed the quality of dying and death in Asian countries were identified: the Good Death Inventory (GDI), the Good Death Scale (GDS), and two versions of the Quality of Dying and Death (QODD) Questionnaires. All included studies failed to evaluate all the recommended psychometric properties, and none of the instruments provided strong evidence of their quality among Asian populations. Overall, the grade of evidence quality for the GDI was moderate, the highest among all identified instruments. CONCLUSION: The GDI is by far the most reliable instrument for assessing the quality of dying and death in Asian populations. A lack of validation studies in Asian and Western cultures, however, warrants caution when drawing conclusions from the GDI.

Translation, Validity and Internal Consistency of the Quality of Dying and Death Questionnaire for Brazilian families of patients that died from cancer: a cross-sectional and methodological study

ABSTRACT BACKGROUND: The Quality of Dying and Death Questionnaire (QoDD) may prove to be an important evaluation tool in the Brazilian context, and, therefore, can contribute to a more precise evaluation of the dying and death process, improving and guiding the end-of-life patient care. OBJECTIVE: To translate and cross-culturally adapt the QoDD into Brazilian Portuguese and measure its validity (convergent and known-groups) and internal consistency DESIGN AND SETTING: A cross-sectional, methodological study was conducted at the Hospital de Câncer de Barretos, Brazil METHODS: A total of 78 family caregivers participated in this study. Semantic, cultural, and conceptual equivalences were evaluated using the content validity index. The construct validity was assessed through convergent validation and known groups analysis [presence of family members at the place of death; feel at peace with dying; and place of death (hospital versus home; hospital versus Palliative Care)]. Internal consistency was evaluated using Cronbach's alpha. RESULTS: The questionnaire was translated into Brazilian Portuguese and presented evidence of a clear understanding of its content. Cronbach's alpha values were ≥ 0.70, except for the domains of treatment preference (α = 0.686) and general concerns (α = 0.599). The convergent validity confirmed a part of the previously hypothesized correlations between the Palliative Care Outcome Scale-Brazil (POS-Br) total scores and the QoDD domain scores. The QoDD-Br domains could distinguish the patients who died in palliative care and general wards. CONCLUSION: The QoDD-Br is a culturally adapted valid instrument, and may be used to assess the quality of death of cancer patients.

Translation and Cultural Adaptation into Portuguese of the Quality of Dying and Death Scale for Family Members of Patients in Intensive Care Units.

The translation and cultural adaptation of the Quality of Dying and Death in Brazil may provide a reliable and reproducible scale for collecting and analyzing data on the process of dying and death, given the absence of Brazilian studies that have produced or used scales in this topic. The purpose of this study was to perform the translation and cultural adaptation of the Quality of Dying and Death (QODD 3.2a) scale for intensive care patients' relatives into Portuguese (Brazil). This methodological study was carried out in a public university of the São Paulo State University (UNESP) medical school, São Paulo, Brazil, in three stages: translation and back-translation by two native-speaking independent professionals, analysis by a committee of specialists, and a pre-test phase. The final version was created by seven experts after making semantic, idiomatic, and cultural changes to 16 items. The results indicated a satisfactory content validation index (CVI ≥ 0.80). This version was applied on 32 relatives of patients who were hospitalized in a public hospital in the interior of São Paulo. No item was excluded from the instrument. The content and face validity were achieved to a satisfactory standard, in addition to reaching the minimum parameters recommended in the literature. The Portuguese version of QODD 3.2a for relatives of deceased patients in intensive care is appropriate and culturally adapted for use in Brazil.

Caregiver bereavement outcomes in advanced cancer: associations with quality of death and patient age.

PURPOSE: We investigated relationships between domains of quality of dying and death in patients with advanced cancer and their caregivers' bereavement outcomes and the moderating effect of patient age at death. METHODS: Bereaved caregivers of deceased patients with advanced cancer who had participated in an early palliative care trial completed measures of grief (Texas Revised Inventory of Grief [TRIG]), complicated grief (Prolonged Grief Inventory [PG-13]), and depression (Center for Epidemiologic Studies-Depression [CESD-10]). They also completed the Quality of Dying and Death measure (QODD), which assesses patients' symptom control, preparation for death, connectedness with loved ones, and sense of peace with death. RESULTS: A total of 157 bereaved caregivers completed the study. When patient age × QODD subscale interactions were included, greater death preparation was related to less grief at patient death (past TRIG: ß = - .25, p = .04), less current grief (present TRIG: ß = - .26, p = .03), less complicated grief (PG-13: ß = - .37, p = .001), and less depression (CESD-10: ß = - .35, p = .005). Greater symptom control was related to less current grief (present TRIG: ß = - .27, p = .02), less complicated grief (PG-13: ß = - .24, p = .03), and less depression (CESD-10: ß = - .29, p = .01). Significant patient age × connectedness interaction effects for current grief (present TRIG: ß = .30, p = .02) and complicated grief (PG-13: ß = .29, p = .007) indicated that, with less connectedness, younger patient age at death was associated with greater caregiver grief. CONCLUSION: Better end-of-life death preparation and symptom control for patients with cancer may attenuate later caregiver grief and depression. Less connectedness between younger patients and their families may adversely affect caregiver grief.

Validation of the Chinese Version of the Quality of Dying and Death Questionnaire for Family Members of ICU Patients.

CONTEXT: The quality of end-of-life care services directly affects the end-of-life quality of life of patients and their families. At present, there are no standard tools in China for assessing the quality of dying and death (QODD) of critical intensive care unit (ICU) patients. OBJECTIVES: This study aimed to introduce the Chinese version of the QODD questionnaire for family members of ICU patients, after transcultural adaptation and validation, to provide an effective instrument for assessing the quality of end-of-life care of ICU patients in China, fill the gap in the evaluation of the quality of end-of-life care of critical ICU patients in China, and offer a theoretical basis and practical guidance during purposeful intervention. METHODS: This study involved the main adult caregivers or principal family members of 149 dying critically ill patients. The original QODD scale was translated using the double forward and backward method. Nine cultural adaptation experts adapted the Chinese version of the QODD scale for completion by family members of ICU patients. Then, we carried out content validity, structural validity, internal consistency, confirmatory factors, and item correlation analysis of the modified scale. RESULTS: The Chinese version of the QODD for family members of ICU patients was developed after some items were deleted or modified. The content validity index was 0.93, indicating that all items were correlated with the measurement of death quality. The Kaiser-Meyer-Olkin value was 0.797, suggesting that the correlations between items were high. The Cronbach's α was 0.865, indicating good internal consistency. In confirmatory factor analysis, the fit indices were χ2 = 207.327, non-normed fit index = 0.916, root mean square error of approximation = 0.033, and comparative fit index = 0.93, indicating a good fit of the five-factor model of the Chinese version of the QODD questionnaire for family members of ICU patients. CONCLUSION: The Chinese version of the QODD questionnaire for family members of ICU patients is a reliable and effective instrument for evaluating the quality of death among patients who die in the ICU and can be applied to clinical practice and research.

End-of-life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions.

AIM: In complex congenital heart diseases (CHD), patients may remain affected by significant morbidity and mortality after surgery. We analysed the end-of-life (EoL) care in children with severe CHD who died in our institution and investigated perspectives of parents and health-care professionals (HCPs). METHODS: Medical records of all children (age < 18 years old) affected by a severe CHD who died in a tertiary cardiac care centre were reviewed. Subsequently, a cross-sectional questionnaire-based study of parents and HCPs of children involved in the study was designed. RESULTS: In total, 30 children died (median age: 45 days; range: 15 days to 3.4 years). Of them, 97% (31/32) died in an intensive care unit setting and were intubated and sedated at EoL. A total of 77% (23/30) died without parents being present at bedside. Eighteen families and 10 HCPs were interviewed. For 61% of the parents (11/18) and 70% of the clinicians (7/10), the goal of therapy at the EoL was 'to lessen your child's suffering as much as possible'. Overall, 44% of parents (8/18) and 50% of HCPs recognised that their child had no chance of survival 'a few days before the child died'. CONCLUSIONS: We believe that these data suggest an unconscious reluctance to change goals of care in EoL, shifting from intensive care to comfort and quality of life.

The quality of dying and death measurement instruments: A systematic psychometric review.

AIMS: To identify instruments that could assess the quality of dying and death and their psychometric properties. To assess the methodological quality of studies on measurement properties. BACKGROUND: A high quality of death is regarded as a goal at the end of life and, therefore, an assessment of the end of life experience is essential. Many instruments have been developed to evaluate the quality of dying and death. The selection of the most appropriate measure to be used in clinical and research settings is crucial. DESIGN: Psychometric systematic review. DATA SOURCES: We systematically searched ProQuest Medline, SciELO and ProQuest PsycINFO from 1970 - May 2016. REVIEW METHODS: Identification and evaluation of instruments that assessed quality of dying and death. Papers were evaluated by two independent reviewers according to the COSMIN checklist with a 4-point scale. RESULTS: A total of 19 studies were included in this review. Seven instruments were found that were specifically designed for assessing quality of dying and death. A retrospective carer proxy report to evaluate this construct was used in most of the papers. The methodological quality of the studies was fair for most of the psychometric characteristics analyzed. CONCLUSION: Many instruments have been developed to assess the quality of dying and death. The Quality of Dying and Death Questionnaire is the best available measure of the quality of dying and death. It is the only questionnaire identified in this review where all psychometric properties according to the COSMIN checklist have been evaluated.

Palliative Care Patients' Quality of Dying and Circumstances of Death-Comparison of Informal Caregivers' and Health-Care Professionals' Estimates.

BACKGROUND: Patient-reported outcomes are usually considered to be the gold standard assessment. However, for the assessment of quality of dying and death, ratings of informal caregivers (ICGs) or health-care professionals (HCPs) must be considered for ethical and methodological reasons. This article aims to present results of ICGs' and HCPs' estimates of the questionnaire, quality of dying and death (QoDD) on patients who died in PCUs and to compare the level of agreement of both ratings/raters. METHODS: The parent validation study to this analysis assessed the ICG and HCP versions of the QoDD. Descriptive statistics are presented for each item in both versions. T tests for the estimation of differences between ICG and HCP were performed. Case-related absolute differences between estimates were analyzed regarding the extent of agreement and deviation. RESULTS: Two hundred fifteen matched ICG and HCP ratings were analyzed. The ratings in all 6 QoDD dimensions were high; single items scored low. Mean absolute difference between both ratings was 0.33 (standard deviation [SD]: 3.08; median 0.05) on a 0 to 10 numerical rating scale and ranges between -8.24 (higher rating of ICGs compared to HCPs) and 9.33 (higher rating of HCPs compared to ICGs). CONCLUSIONS: The findings appear to show a high satisfaction with quality of dying and death as rated by ICGs and HCPs, but we suspect this might be indicative of a methodological challenge, that is, a ceiling effect in both assessments. Single low scoring items may provide important clues for improvement in end-of-life care. Although descriptive data show comparable mean values and standard deviations, the actual congruence of ratings is low. In summary, replacing one rating by another cannot be recommended.

Cross-cultural adaptation and psychometric testing of the Quality of Dying and Death Questionnaire for the Spanish population.

PURPOSE: Many measurements have been developed to assess the quality of death (QoD). Among these, the Quality of Dying and Death Questionnaire (QODD) is the most widely studied and best validated. Informal carers and health professionals who care for the patient during their last days of life can complete this assessment tool. The aim of the study is to carry out a cross-cultural adaptation and a psychometric analysis of the QODD for the Spanish population. METHODS: The translation was performed using a double forward and backward method. An expert panel evaluated the content validity. The questionnaire was tested in a sample of 72 Spanish-speaking adult carers of deceased cancer patients. A psychometric analysis was performed to evaluate internal consistency, divergent criterion-related validity with the Mini-Suffering State Examination (MSSE) and concurrent criterion-related validity with the Palliative Outcome Scale (POS). RESULTS: Some items were deleted and modified to create the Spanish version of the QODD (QODD-ESP-26). The instrument was readable and acceptable. The content validity index was 0.96, suggesting that all items are relevant for the measure of the QoD. This questionnaire showed high internal consistency (Cronbach's α coefficient = 0.88). Divergent validity with MSSE (r = -0.64) and convergent validity with POS (r = -0.61) were also demonstrated. CONCLUSIONS: The QODD-ESP-26 is a valid and reliable instrument for the assessment of the QoD of deceased cancer patients that can be used in a clinical and research setting.

Interference Between Family Caregivers' Mental Disorders and Their Estimates of Quality of Dying and Death (QODD) of Their Loved Ones.

BACKGROUND: In studies enrolling informal caregivers of patients in palliative care, it is necessary to ensure that findings are not influenced by factors such as mental disorders. AIM: This study aims to describe the influence of anxiety and depression on bereaved informal caregivers' retrospective ratings of the quality of dying and death (QoDD) of their loved ones. DESIGN: Informal caregivers of deceased patients from 2 German palliative care (PC) units took part in a validation study of the German version of the original QoDD-Deutsch-Angehörige (QoDD-D-Ang) during the fourth week following the patient's death at the earliest. Depressive and panic disorders were assessed via the Patient Health Questionnaire (PHQ). Group comparisons (χ2, t test; significance level P < .05) analyzed whether informal caregivers with depression or panic disorders and those without such disorders differ in their estimates. RESULTS: A total of 226 informal caregivers participated between August 2012 and December 2013. The mean age of participants was 55.5 years; 61.1% were female. The PHQ of 221 participants resulted in 8.6% with major disorders, 13.6% with other depressive syndromes, and 77.8% without depressive disorders. In this secondary data analysis here, there was no difference between female and male participants concerning the incidence of depression ( P = .519, χ2). Two participants screened positive for both panic and major depressive disorders. Both groups presented no significant differences in the mean total QoDD-D-Ang scores ( P = .343). CONCLUSION: Informal caregivers' estimates on the QoDD-D-Ang of their significant others do not interfere with mental disorders. Therefore, bereaved informal caregivers are able to participate in the PC research after a few weeks following the loss of a loved one.

Resilience and vulnerability: prolonged grief in the bereaved spouses of marital partners who died of AIDS.

Spousal bereavement is closely linked to prolonged grief, that is, significant adjustment symptoms that last for more than six months after the loss. This article focused on potential risk and protective factors that may influence bereavement outcomes. Participants in this study were surviving spouses of individuals who died of acquired immune deficiency syndrome (AIDS). These participants were themselves living with human immunodeficiency syndrome. In this cross-sectional study, 120 bereaved participants completed measures of grief, quality of dying and death of the deceased, negative conceptions of death resulting from AIDS, death attitudes, and personal resilience. The results showed that one-third (35.0%) of the bereaved participants reported grief levels above the prolonged grief cut-off scores, and can be categorized as the "prolonged grief" group. Although quality of dying and death was not associated with the intensity of grief, negative conceptions of death from AIDS, fear of death and resilience independently predicted grief symptoms in the regression models. Our findings provide insight into the grief process for the surviving spouse of AIDS victims in rural China. Since resilience is malleable, developing resilience interventions to enhance adjustment to bereavement may be a promising direction in grief counselling and therapies.

Validation of the German Version of the Quality of Dying and Death Questionnaire for Health Professionals.

PURPOSE: To validate the Quality of Dying and Death (QoDD) instrument for health professionals (QoDD-D-MA) and to test its feasibility in 2 German palliative care units (PCUs). METHODS: The QoDD was translated from English to German and then retranslated following European Organisation for Research and Treatment of Cancer (EORTC) guidelines. Data were collected in 2 German PCUs to calculate aspects of validity and reliability. RESULTS: Mean total score was 83.05 (range 49-100; N = 232). The QoDD-D-MA showed satisfactory psychometric properties, Cronbach α = .830; interrater reliability r = .245 (P < .01). The QoDD-D-MA was independent of patients' demographic and clinical aspects. Some challenges occurred when applying the instrument. CONCLUSIONS: Feasibility could be improved by adapting the QoDD-D-MA to create a self-assessment version and finding a solution for items that result in many missing data. Future research should validate the QoDD-D-MA in other care settings.

Validation of the German Version of the Quality of Dying and Death Questionnaire for Informal Caregivers (QODD-D-Ang).

CONTEXT: The quality of dying and death (QOD) influences end-of-life care for patients and their relatives. To the best of our knowledge, there are currently no validated standard instruments for evaluating the QOD of patients in palliative care units (PCUs) in Germany. OBJECTIVES: This study aimed to validate the German version of the multidimensional questionnaire "Quality of Dying and Death" for informal caregivers (QODD-Deutsch-Angehörige [QODD-D-Ang]) and provide a detailed report on its validity and reliability. METHODS: The QODD was forward/backward translated following the European Organization for Research and Treatment of Cancer guidelines. Data collected in two German palliative care units (N = 226) with the QODD-D-Ang were used to calculate the QODD-D-Ang total score (TS) and to define reliability and validity, as well as acceptance and burden for informal caregivers. Frequencies, means, and SDs of various patient data related to care and disease were calculated to describe the study population and to look at group differences. RESULTS: The mean TS of 175 participants was 75.72 (range 38-99; minimum 0 to maximum 100; higher scores indicate better QOD). The QODD-D-Ang showed good internal consistency for 27 items (Cronbach's alpha 0.852). Factors extracted by factor analysis could not be usefully interpreted. The TS of the QODD-D-Ang correlated substantially with the Palliative care Outcome Scale (r = 0.540), indicating good convergent validity. The QODD-D-Ang TS was stable for various demographic and clinical dimensions except for the amount of days on which informal caregivers visited patients, and, therefore, provided good discriminant validity. CONCLUSION: Analyses of validity and reliability of the QODD-D-Ang showed satisfactory to good psychometric properties, meaning that the QODD can be recommended for standard implementation in German hospices and palliative care institutions to measure the QOD. Feasibility could be improved by adapting the instrument so that it may be administered with minimal demands on staff. When interpreting the results, it should be kept in mind that the QODD-D-Ang does not measure quality of care but the quality of the dying process as estimated by bereaved relatives.

Assessing the Quality of Death and Dying in an Integrated Health Care System in Rural Pennsylvania.

CONTEXT: With growing emphasis on improving the value of health care, there is increased scrutiny of quality outcomes and high health expenditures during the final months of life. OBJECTIVES: The purpose of this project is to answer 1) how do next of kin (NOK) perceive the quality of their loved ones' dying and death; 2) are there patient and NOK characteristics that predict lower quality; and 3) are there structural aspects of care associated with lower quality? METHODS: A mailed survey was administered to a stratified random sample of NOK of Geisinger Health System patients who had died in the past year. The Quality of Death and Dying, the General Anxiety Disorder seven-item scale, the Patient Health Questionnaire eight-item depression scale, and selected questions from the Toolkit of Instruments to Measure End of Life Care were used. RESULTS: There were 672 respondents. Significant predictors of Quality of Death and Dying score were number of doctors involved in care (P = 0.0415), location of death (P < 0.0001), frequency of receiving confusing or contradictory information (P < 0.0001), illness progression (P = 0.0343), Patient Health Questionnaire-2 score (P = 0.0148), and General Anxiety Disorder seven-item scale score (P < 0.0070). CONCLUSION: Several findings suggest that factors such as NOK depression and anxiety, prolonged illness, dying in the hospital, receipt of conflicting information, and confusion around the doctor in charge are associated with lower quality of the dying and death experience for NOK. Further investigation is warranted to facilitate high-quality measurement and the use of measurement results to improve care.