Place of Death and the Differences in Patient Quality of Death and Dying and Caregiver Burden

2015 ◽  
Vol 33 (4) ◽  
pp. 357-363 ◽  
Author(s):  
Hiroya Kinoshita ◽  
Isseki Maeda ◽  
Tatsuya Morita ◽  
Mitsunori Miyashita ◽  
Akemi Yamagishi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Caregiver Burden ◽  
Death And Dying ◽  
Terminally Ill ◽  
Place Of Death ◽  
Good Death ◽  
Patients With Cancer ◽  
Quality Of Death ◽  
Palliative Care Units

Purpose To explore the associations between place of death and quality of death and dying and caregiver burden in terminally ill patients with cancer and their families. Methods Two bereavement surveys were conducted in October 2008 and October 2011. A total of 2,247 family caregivers of patients with cancer who were deceased responded to the mail surveys (response rate, 67%). Family members reported patient quality of death and dying and caregiver burden by using the Good Death Inventory and Caregiving Consequences Inventory. Results Patient quality of death and dying was significantly higher at home relative to other places of dying after adjustment for patient and/or family characteristics (adjusted means): 5.0 (95% CI, 4.9 to 5.2) for home, 4.6 (95% CI, 4.5 to 4.7) for palliative care units, and 4.3 (95% CI, 4.2 to 4.4) for hospitals. For all combinations, pairwise P < .001; the size of the difference between home and hospital was moderate (Hedges' g, 0.45). Home was superior to palliative care units or hospitals with respect to “dying in a favorite place,” “good relationships with medical staff,” “good relationships with family,” and “maintaining hope and pleasure” (P < .001 for all combinations of home v palliative care units and home v hospitals). Home death was significantly associated with a lower overall (P = .03) and financial caregiver burden (P = .004) relative to hospital death. Conclusion Dying at home may contribute to achieving good death in terminally ill patients with cancer without causing remarkably increased caregiver burden. Place of death should be regarded as an essential goal in end-of-life care.

Validation of the Spanish version of the QODD questionnaire (QODDq-ESP) in a home-based cancer palliative care program and development of the QODDq-ESP-12.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 70-70
Author(s):  
Pedro Emilio Perez-Cruz ◽  
Oslando Padilla Pérez ◽  
Pilar Bonati ◽  
Oliva Thomsen Parisi ◽  
Laura Tupper Satt ◽  
...  
Keyword(s):  
Palliative Care ◽  
Convergent Validity ◽  
Death And Dying ◽  
Care Program ◽  
Spanish Version ◽  
Global Rating ◽  
Care Clinic ◽  
Phone Interview ◽  
Quality Of Death

70 Background: Improving quality of death (QOD) is a key goal in palliative care. No instruments to measure QOD have been validated in Spanish. The goal of this study was to validate the Spanish version of the quality of death and dying questionnaire (QODD) and to develop a shortened version of this instrument suitable to be completed by phone interview. Methods: Translation/back-translation and adaptation of the QODD was performed following established standards. One question was removed due to cultural inadequacy. We enrolled caregivers (CGs) of consecutive deceased cancer patients from a single palliative care clinic in Santiago, Chile. CGs were contacted by phone between 4 and 12 weeks after patients’ death. Participating CGs completed the adapted QODD (QODD-ESP) by phone interview. A global rating question assessing quality of life (QOL) during the last week of life was included. A shortened version of the QODD (QODD-ESP-12) based on the model by Downey et al. (J Pain Sympt Manage 2010;39) was created. Measures of reliability (Cronbach-alpha), convergent validity (correlation with global rating question) and construct validity (factorial analysis [FA]) were estimated for both versions of the instrument. Results: 150 (50%) out of 302 CGs completed the QODD-ESP. Patients mean (standard deviation [SD]) age was 67 (14), 71 (47%) female and 131 (87%) died at home. CGs mean (SD) age was 51 (13), 128 (85%) female. Mean QODD-ESP score was 69 (range 35-96) with an alpha = .829. Correlation with last week QOL was .434 (p < .01). Kaiser-Meyer-Olkin measure of sampling adequacy was .585, not supporting the existence of a unique underlying construct. Mean QODD-ESP-12 score was 69 (range 31-97) with a alpha = .728. Correlation with last week QOL was .306 (p < .01). Confirmatory FA of QODD-ESP-12 showed that data fitted well Downey’s model (Chi2 4.85 (60), p = .311 Comparative Fit ndex = .98; Tuker-Lewis Index = .977 and root mean square error of approximation (RMSEA) = .023 (CI: 0-.056). Conclusions: QODD-ESP-12 is a reliable and valid instrument with good psychometric properties and can be used to assess QOD in a Spanish speaking cancer palliative care population by phone interview.

scholarly journals Definitions for “palliative care”, “end-of-life” and “terminally ill” in oncology: a scoping review

2020 ◽  
Vol 9 (2) ◽  
pp. 205-228
Author(s):  
Franciele Roberta Cordeiro ◽  
Stefanie Griebeler Oliveira ◽  
Juliana Zeppini Giudice ◽  
Vanessa Pellegrini Fernandes ◽  
Adriéli Timm Oliveira
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Web Of Science ◽  
Functional Decline ◽  
Terminally Ill ◽  
Descriptive Statistics ◽  
Quality Of Death ◽  
Clinical Worsening

Objective: to identify and map the definitions for palliative care, end of life, and terminally ill in the oncology literature. Materials and method: scoping review guided by Joanna Brigs Institute recommendations. We analyzed original articles, published between 2012 and 2017, indexed in the databases Pubmed, Web of Science and Scopus. The data collection resulted in 51 articles selected for analysis. Also, we have consulted the websites of 25 palliative care societies from countries best ranked in The Economist’s Quality of Death Ranking. The data were analyzed through descriptive statistics, and summary of the themes, in this case the definitions. Results: terminally ill is a disease with a prognosis of lifetime ranging between hours and months, there is clinical worsening, functional decline, and presence of metastases. Palliative care aims to promote quality of life and dignity. End of life is the period of up to 12 months before death. Conclusions: we constructed synthesis and definitions for the concepts investigated. Thus, it was possible to contribute to the adoption of a standardized language in care and investigations with cancer patients in end-of-life

Comparison of Patient Self-Reported Quality of Life and Health Care Professional-Assessed Symptoms in Terminally ill Patients With Cancer

2020 ◽  
pp. 104990912094415
Author(s):  
Chikako Matsumura ◽  
Nanako Koyama ◽  
Morito Sako ◽  
Hideo Kurosawa ◽  
Takehisa Nomura ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Terminally Ill ◽  
Patients With Cancer ◽  
Terminally Ill Patients ◽  
Patient Reported ◽  
Exact Agreement

Background: Few studies evaluated whether health care professionals accurately assess several symptoms for patients with cancer in palliative care units. We determined the agreement level for several symptoms related to quality of life (QOL) between patient-reported QOL assessment and health care professional-assessed symptoms based on the Support Team Assessment Schedule (STAS). Method: An observational study was performed with terminally ill patients with cancer hospitalized in the palliative care unit between June 2018 and December 2019. Patients and health care professionals independently assessed 7 symptoms at the time of hospitalization and after 1 week. Patients completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C15-PAL). In examining the proportions of exact agreement, “exact agreement” referred to the pairs of the scores (QLQ-C15-PAL vs STAS) being (1 vs 0), (2 vs 1), (3 vs 2 or 3), or (4 vs 4). The relationships of physical functioning between QLQ-C15-PAL and Palliative Performance Scale (PPS) were examined. Results: Of 130 patients, approximately 60% had PPS scores from 40 to 60. The highest mean score on QLQ-C15-PAL was for fatigue (63.8). The exact agreement on symptoms between patients and health care professionals ranged from 15.4% (fatigue) to 57.7% (nausea and vomiting). The mean of the transformed QLQ-C15-PAL and proportions of exact agreement were negatively correlated ( R 2 = 0.949, P < .05). The physical function scores in QLQ-C15-PAL for each PPS group showed no differences. Conclusion: We expect patient-reported outcomes including QLQ-C15-PAL to be added to health care professionals’ assessment of serious symptoms such as fatigue in terminally ill patients with cancer.

scholarly journals Correction: Palliative care team consultation and quality of death and dying in a university hospital: A secondary analysis of a prospective study

PLoS ONE ◽  
2018 ◽  
Vol 13 (11) ◽  
pp. e0208564 ◽  
Author(s):  
Arianne Brinkman-Stoppelenburg ◽  
Frederika E. Witkamp ◽  
Lia van Zuylen ◽  
Carin C. D. van der Rijt ◽  
Agnes van der Heide
Keyword(s):  
Palliative Care ◽  
Prospective Study ◽  
Death And Dying ◽  
Secondary Analysis ◽  
Palliative Care Team ◽  
Care Team ◽  
University Hospital ◽  
Quality Of Death ◽  
A Prospective Study

scholarly journals Palliative care team consultation and quality of death and dying in a university hospital: A secondary analysis of a prospective study

PLoS ONE ◽  
2018 ◽  
Vol 13 (8) ◽  
pp. e0201191 ◽  
Author(s):  
Arianne Brinkman-Stoppelenburg ◽  
Frederika E. Witkamp ◽  
Lia van Zuylen ◽  
Carin C. D. van der Rijt ◽  
Agnes van der Heide
Keyword(s):  
Palliative Care ◽  
Prospective Study ◽  
Death And Dying ◽  
Secondary Analysis ◽  
Palliative Care Team ◽  
Care Team ◽  
University Hospital ◽  
Quality Of Death ◽  
A Prospective Study

scholarly journals Improved Quality of Death and Dying in Care Homes: A Palliative Care Stepped Wedge Randomized Control Trial in Australia

2019 ◽  
Vol 68 (2) ◽  
pp. 305-312 ◽  
Author(s):  
Wai‐Man Liu ◽  
Jane Koerner ◽  
Lawrence Lam ◽  
Nikki Johnston ◽  
Juliane Samara ◽  
...  
Keyword(s):  
Palliative Care ◽  
Randomized Control Trial ◽  
Death And Dying ◽  
Care Homes ◽  
Stepped Wedge ◽  
Quality Of Death ◽  
Randomized Control

scholarly journals Smooth Transitions and Good Deaths: Unique Palliative Needs of Early Deaths Oral Squamous Cell Carcinoma

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 229s-229s
Author(s):  
S. Banoo ◽  
L. Ganigapenta ◽  
C.S. Mani
Keyword(s):  
Palliative Care ◽  
Squamous Cell Carcinoma ◽  
Oral Squamous Cell Carcinoma ◽  
Cell Carcinoma ◽  
Place Of Death ◽  
Advanced Directives ◽  
Early Relapse ◽  
Family Meetings ◽  
Quality Of Death

Background: Early deaths in oral squamous cell carcinoma (OSCC) patients and their unique palliative needs are underresearched. Despite strict selection criteria for curative treatment a substantial proportion undergo transition to palliative intent treatment with early relapse and death within 12 months. There have not been many studies on their transition to palliative care and their supportive care. Aim: Analyze the palliative needs of early relapse and deaths of OSCC patients 1. Assess the most distressing symptom in this cohort of patients 2. Factors contributing to satisfactory death in this group Methods: Retrospective cohort study involving 22 oral squamous cell carcinoma patients who had died between January 2016 to December 2017 within 12 months of being diagnosed and treated with intent to cure. The demographic, staging, treatment, their symptoms, the physician-patient contact time in terms of family meetings, preferred place of death and advanced directives were extracted from the existing database. We also collected the family members opinions about factors that influenced the quality of death of the loved ones. Results: Evaluation of the symptoms that required urgent intervention in this group comprised of pain (76.3%), dyspnea (41%), poor nutrition (23%) and communication difficulties (40%). 14 (60%) required opioids for the pain control. High doses of morphine was used in patients noted to have distant metastasis. 50% of the patients in the group agreed that their preferred place of death was home. And 80% of them had all their advanced directives in place. Factors that greatly contributed to the graceful acceptance of death among the care givers are, distress management, scrupulous management of pain and symptoms during end of life and facilitating their preferred place of death. Among the various factors that we observed that contributed to caregiver satisfaction: the number of physician–family meetings were significant ( P = .0001). Conclusion: Our study confirmed the role of joint family meetings with the treating team and the palliative care with increased frequency has positive impact on the quality of death of this unique cohort of patients with short interval between relapse and death. The complex challenges in early relapse OSCC can be addressed by (1) joint care by primary treating physician and palliative care team. (2) family meetings to be initiated early and conducted more frequently with both treating team and palliative care team. (3) reduced threshold to control of symptoms by potent medication or hospitalization (4) managing the factors that give a satisfactory death in this group in terms preferred place of death, advanced directives, management of distressing symptoms in the end of life. With a more comprehensive understanding of this cohorts unique palliative needs helps the oncology and palliative teams to provide improved patient care, quality of life, smooth transition to palliative care and a good quality of death.

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