Bereaved Family Members' Perspectives of Good Death and Quality of End-of-Life Care for Malignant Pleural Mesothelioma Patients: A Cross-Sectional Study

Our plain-English summary of Bereaved Family Members' Perspectives of Good Death and Quality of End-of-Life Care for Malignant Pleural Mesothelioma Patients: A Cross-Sectional Study, by Y. Nagamatsu, Y. Sakyo, E. Barroga, et al (Journal of Clinical Medicine, 2022).

The study

• Authors: Y. Nagamatsu, Y. Sakyo, E. Barroga, R. Koni, Y. Natori, M. Miyashita
• Journal: Journal of Clinical Medicine
• Published: 2022;11(9)
• Cited by: 6 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Objective: This study investigated whether malignant pleural mesothelioma (MPM) patients achieved good deaths and good quality of end-of-life care compared with other cancer patients from the perspective of bereaved family members in Japan.

Methods: This cross-sectional study was part of a larger study on the achievement of good deaths of MPM patients and the bereavement of their family members. Bereaved family members of MPM patients in Japan (n = 72) were surveyed. The Good Death Inventory (GDI) was used to assess the achievement of good death. The short version of the Care Evaluation Scale (CES) version 2 was used to assess the quality of end-of-life care. The GDI and CES scores of MPM patients were compared with those of a Japanese cancer population from a previous study.

Results: MPM patients failed to achieve good deaths. Only 12.5% of the MPM patients were free from physical pain. The GDI scores of most of the MPM patients were significantly lower than those of the Japanese cancer population. The CES scores indicated a significantly poorer quality of end-of-life care for the MPM patients than the Japanese cancer population. The total GDI and CES scores were correlated (r = 0.55).

Conclusions: The quality of end-of-life care for MPM patients remains poor. Moreover, MPM patients do not achieve good deaths from the perspective of their bereaved family members.

In plain English

This cross-sectional survey asked bereaved family members in Japan about relatives who died of malignant pleural mesothelioma (MPM). Questionnaires went through a victims' and families' advocacy group to 109 family members in November 2016; 72 were analyzed. Families rated whether the patient had a 'good death' (Good Death Inventory) and the quality of end-of-life care (Care Evaluation Scale). Scores were compared with an earlier national study of Japanese cancer patients (J-HOPE). The mean good-death score for MPM patients was 61.9, significantly lower than 81.1 in the comparison group. Only 12.5% of MPM patients were rated as free from physical distress. The mean care score was 70.3, significantly lower than 75.8. Of the 51 patients who received chemotherapy, more than half had pain, dyspnea (breathlessness), anorexia and anxiety when chemotherapy ended. Good-death and care scores were correlated. The authors concluded that good deaths were remarkably rare among these patients and that their end-of-life care was poorer than that of other cancer patients. They noted a small advocacy-group sample, possible recall bias, and that the design cannot establish cause.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Cross-sectional survey of bereaved family members using self-administered postal questionnaires. Scores were compared with data from a previous national study of Japanese cancer patients (J-HOPE). This was part of a larger study that also examined complicated grief.
• Who was studied: Bereaved family members of patients diagnosed with MPM after 2008, contacted through the Japan Association of Mesothelioma and Asbestos-Related Disease Victims and their Families. Questionnaires were sent to 109 people in November 2016, and 74 (67.9%) were returned by March 2017. Two respondents bereaved within six months were excluded, leaving 72 analyzed; 72.2% were spouses. Of the deceased patients, 81.9% were men, the mean age at diagnosis was 66.9 years, and mean survival was 14.5 months. The comparison data came from 8398 family-member responses in the earlier J-HOPE study.
• Exposure: The study examined end-of-life experience in patients with MPM rather than asbestos dose. Families reported the patient's source of asbestos exposure as occupation 49 (68.1%), neighboring factory 17 (23.6%), school 1 (1.4%), family 1 (1.4%) and unknown 4 (5.4%). No fiber types are named.
• Main results:
  • The mean total Good Death Inventory score for the MPM patients was 61.9 ± 15.7, significantly lower than 81.1 for the J-HOPE cancer patients.
  • 'Being free from physical distress' was true for 12.5% of the MPM patients. The results section gives 64.7% for the J-HOPE cancer patients; other parts of the article give different comparison figures.
  • The mean total Care Evaluation Scale score for the MPM patients was 70.3 ± 16.0, significantly lower than 75.8 for the J-HOPE cancer patients.
  • At the end of chemotherapy, among the 51 patients who received chemotherapy, more than half had pain (74.5%), dyspnea (70.6%), anorexia (66.7%) and anxiety (54.9%). At the final critical stage, among all 72 patients, the most common symptoms were dyspnea (86.1%), pain (83.3%) and anorexia (75.0%).
  • Good Death Inventory and Care Evaluation Scale total scores were significantly associated (correlation coefficient ρ = 0.554, p = 0.0001).
  • In multiple regression, higher good-death scores were significantly related to three factors:
• satisfaction with care when the patient became critical (B 11.597, 95% CI 5.053 to 18.141)
• the surveyed family member being female (B 11.061, 95% CI 3.018 to 19.103)
• the patient dying later than expected (B 3.270, 95% CI 0.164 to 6.376)
  • Higher care scores were significantly related to two factors:
• satisfaction with care when the patient died (B 13.272, 95% CI 9.824 to 16.720)
• having received chemotherapy (B 4.048, 95% CI 0.391 to 7.705)
• The authors' conclusion: The authors concluded that achieving a good death was remarkably rare among MPM patients in Japan. They found that patients carried a heavy symptom burden and were seldom free of physical distress, and that their end-of-life care was poorer than that of other cancer patients. They called for further research and interventions.
• Limitations the authors state:
  • Japan has no registration system for MPM patients, so not all bereaved families could be contacted and the sample was small.
  • Participants were advocacy-group members and may not represent bereaved families of MPM patients in general; they may have been less distressed by the care received.
  • The mean time since bereavement was 45.2 months, so participants may have had recall bias or forgotten key factors.
  • Because the study was cross-sectional, no causal relationships were established.

Topics

Medical terms in this study, explained in our Lexicon: Pleural Mesothelioma.

Related studies

• Depression and Complicated Grief, and Associated Factors, of Bereaved Family Members of Patients Who Died of Malignant Pleural Mesothelioma in Japan — Y. Nagamatsu, Y. Sakyo, et al. (2022)
• Quality of life of survivors of malignant pleural mesothelioma in Japan: a cross sectional study — Y. Nagamatsu, I. Oze, et al. (2018)
• WWW mesothelioma information: Surfing on unreliable waters. A cross-sectional study into the content and quality of online informational resources for mesothelioma patients — S.S. Soloukey Tbalvandany, A.A.P.W.M. Maat, et al. (2018)
• Asbestos-related pleural disease due to tremolite associated with progressive loss of lung function: serial observations in 123 miners, family members, and residents of Libby, Montana — A.C. Whitehouse (2004)
• Kinesin family members KIF11 and KIF23 as potential therapeutic targets in malignant pleural mesothelioma — T. Kato, D. Lee, et al. (2016)
• Detecting germline BAP1 mutations in patients with peritoneal mesothelioma: benefits to patient and family members — M. Kittaneh, C. Berkelhammer (2018)

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