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.

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.

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.

Dimensions of Death-Related Attitudes in a French-Speaking Sample.

This study examines the structure of death-related attitudes among French-speaking people. Participants from Canada, Belgium, France, and from Switzerland whose mother tongue was French in an online survey responded to the French adaptation of the item pool of the Multidimensional Orientation Toward Dying and Death Inventory (MODDI; N = 373). Exploratory factor analyses with orthogonal and oblique rotation yielded a 5-factor Fear domain and a 3-factor Acceptance domain, thereby reproducing the a-priori conceptualization. These results are discussed with respect to the issue of universal dimensions of death-related attitudes across cultures.

Imaginaries of Dying: The Visual Rhetoric of Stock Images Tagged with "Palliative Care".

In digital culture and its global economy, images circulate transnationally and shape cultural ideas about social and existential issues. While there is growing interest in death online, few studies have investigated the role of visual material in different forms of communication in this field. In this article, we examine the depiction of dying and death in stock photographs tagged with "palliative care" drawing on an image corpus of 618 photographs. Stock photographs are images produced for commercial purposes that are stored in databases by agencies on the Internet. To analyze how these representations depict fictional palliative care settings, we used visual grounded theory. The findings show that typical caregivers are portrayed as emphatic individuals, while patients appear as composed human beings facing death without fear. We argue that the images represent aspects of the modern hospice philosophy and the cultural narrative of healthy aging.

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.

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.

Family caregivers' perceptions about patients' dying and death quality influence their grief intensity.

AIMS AND OBJECTIVES: To understand the influence of family caregivers' perceptions about patients' dying and death quality on their grief intensity. BACKGROUND: Dying patients and their family caregivers face life-limiting illness together, and they work jointly to negotiate shared understandings and mutual adaptation to losses. DESIGN: Cross-sectional data were collected via an online survey. The manuscript followed the STROBE report guideline. METHODS: Family caregivers of patients who had died within 8-365 days prior were recruited. The Quality of Dying and Death Questionnaire (QDDQ) (translated into Mandarin) and the Chinese Grief Reaction Assessment Form (GRAF) were used to measure the two key variables. Multivariate linear regression was performed to explore the links between the two variables while controlling for potential confounders. RESULTS: Data were collected from 170 bereaved Chinese caregivers, and 150 cases were involved in the analysis. The four-factor structure of the QDDQ was appropriate for Chinese participants. After controlling whether end-of-life care was provided and families' satisfaction with physicians' and nurses' services, regressions revealed that more intense grief of the bereaved caregivers was associated with better symptom control for and worse transcendence of the deceased patient. Moreover, those who believed that the deceased had fulfilled his or her family duties before death experienced less intense grief, and the participant's relationship with the deceased also made a difference. CONCLUSION: Two aspects of patients' dying and death quality perceived by family caregivers, namely symptom control and transcendence, have opposite influences on caregivers' grief intensity.

Medical Trainees' Experiences With Dying and Death.

This study investigates medical trainees' experiences with dying and death, by means of semistructured interviews. Nine medical students and nine residents reported a total of 114 experiences. The great majority of these experiences took place during the final year of medical school. The authors identified the latent characteristics, which illustrate an in-depth understanding of the significance of the described experiences. Three main themes emerged: circumstances of death, personal relationship, and one's own role. The age of the dying person, the extent of suffering, time frame and setting, and the patients' behaviors were factors that influence the perceptions of the experiences. The interviewees reported powerful emotional consternation by the patients' deaths with whom they had developed a close relationship. Failure, helplessness, and guilt were negatively associated perceptions of one's own role. This study illustrates the tension between emotional concern and professional detachment. It highlights the continuing existence of a physician image, in which control represents the key issue.

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.

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.

Measuring staff perception of end-of-life experience of older adults in long-term care.

BACKGROUND: Quality of dying and death receive far less attention than quality of life. Measuring the quality of care at end-of-life (EOL) in long-term care (LTC) is essential, to ensure high standards. METHODS: A questionnaire measuring staff perception of their patient's end of life experience (SPELE) was developed. Content validity (CVI) was assessed by a panel of experts, and piloting was conducted with dyads of healthcare assistants (n=15) and nurses (n=15). RESULTS: The SPELE captures facets of the quality of the death and dying experience from healthcare staff's perspective. Good group inter-rater reliability was observed among subscales. One exception was the pain and symptom experience scale. Kappa values showed little agreement between nurses and healthcare assistants for certain symptoms, including pain. CONCLUSION: Further testing of the questionnaire is required. However it is described as a useful mechanism to enable researchers and clinicians to explore quality of care at EOL.

"The unpredictable death"-The last year of life for patients with advanced COPD: Relatives' stories.

OBJECTIVE: The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives. METHOD: Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis. RESULT: All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable. SIGNIFICANCE OF RESULTS: The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

The role of psychologists in supporting illness-related dying and death: A systematic mixed studies review.

Psychologists remain underrepresented in end-of-life care, and there is limited understanding of their role among healthcare professionals, patients, and caregivers. This systematic mixed-studies review, prospectively registered on PROSPERO (CRD42020215775), explored the role of psychologists, and the facilitators and barriers they experience, in supporting clients with illness-related dying and death. A search of six research databases was conducted in October 2023. Fifty-one studies, mainly qualitative and from the perspectives of psychologists, met inclusion criteria. Thematic synthesis highlighted how psychologists provided expertise across various contexts. They supported clients with preparing for death, and adjusting to dying, provided professional consultancy and support, and undertook leadership in enhancing psychological end-of-life care. Results illustrated the sustaining factors and ongoing challenges working in end-of-life care, namely, the unique nature of navigating the death space, recognition and awareness of psychologists' contribution, and the support, training and development required. Given the universality of dying and death, this review is relevant to psychologists working within and beyond more traditional end-of-life care contexts, such as employee assistance programs, private practice, schools, and other psychological services. Policy, clinical and research implications are discussed, including the need for greater engagement and training of psychologists in the dying and death space.

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.

A Survey of State Correctional Health Care Providers on Advance Care Planning: Opportunity for Collaboration With Corrections.

Prison populations are rapidly aging. Persons in prison age quicker and suffer more chronic illness and disability than their nonincarcerated peers, posing challenges to caring for prisoners who are chronically ill and dying. The goal of our study was to describe state prisons' practices and policies addressing persons in prison with advanced chronic and life limiting illness through a national web-based survey of state-level prison health care professionals. In particular, we focused on advanced care planning, use of health care directives, decision-making about goals of care, including life sustaining treatments, The response rate was 22% for a sample size 152 completed surveys. The average age of respondent was 52 years; majority were female and Caucasian, and had worked in corrections more than 8 years. Nearly half were registered nurses. Most reported their prison did not have a dedicated end-of-life care program and only 11% offered a peer-care program. However, two-thirds indicated their facility provided the opportunity to designate a health care agent with physicians most likely responsible for facilitating completion of a health care directive. It is evident the care of persons aging and dying in prison is complex and requires further investigation addressing staff and prison population education, ethics guidelines for care, compassionate release, and advance care planning. This study suggests that hospice and palliative care professionals could collaborate with corrections professionals and national organizations to provide innovative education and support to enhance the humane care of this vulnerable population.

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.

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.