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Achievement of a good death among young adult patients with cancer: analyses of combined data from three nationwide surveys among bereaved family members

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Abstract

Purpose

Although little improvement has been made in the survival rate among young cancer patients over recent decades, whether they have achieved a good death has never been systematically explored. We aimed to clarify whether young cancer patients (aged 20–39 years) have achieved a good death, and compare their achievement with that of middle-aged patients (aged 40–64 years).

Methods

We analyzed combined data of three nationwide, cross-sectional surveys of families of cancer patients who died at inpatient hospices in Japan (2007–2014). We measured 10 core items of the Good Death Inventory (GDI) short-version on a 7-point scale, and calculated rates of “agree/absolutely agree” and the mean scores.

Results

We analyzed 245 and 5140 responses of families of young and middle-aged patients, respectively. Less than 60% of families of young patients reported “agree/absolutely agree” regarding 9 items, which included “feeling that one’s life was completed” in 44 (18%; 95% confidence interval (CI) = 14–23%), “being independent in daily life” in 48 (20%; 95% CI = 15–25%), and “being free from physical distress” in 103 (42%; 95% CI = 36–48%) young patients. Young patients were significantly less likely to feel “one’s life was completed” (mean = 3.3 (standard deviation = 2.0) vs. 3.8 (1.9), respectively; effect size (ES) = 0.29; adjusted p value = 0.000) and “not being a burden to others” (3.1 (1.5) vs. 3.5 (1.6), respectively; ES = 0.24; adjusted p value = 0.010) than the middle-aged.

Conclusions

Overall, young cancer patients did not achieve a good death. Future efforts are needed to improve the quality of palliative care for young patients, focusing on psychosocial/spiritual suffering.

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Acknowledgements

This study was conducted with the cooperation of Hospice Palliative Care Japan (HPCJ). The authors would like to thank all participants and participating institutions for taking part in this study.

Funding

This study was part of The Japan Hospice and Palliative Care Evaluation Study, funded by the Japan Hospice Palliative Care Foundation, and in part supported by the Japan Society for the Promotion of Science KAKENHI Grant Number JP16K15418.

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Correspondence to Masanori Mori.

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Mori, M., Sasahara, T., Morita, T. et al. Achievement of a good death among young adult patients with cancer: analyses of combined data from three nationwide surveys among bereaved family members. Support Care Cancer 27, 1519–1527 (2019). https://doi.org/10.1007/s00520-018-4539-9

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