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Association of illness understanding with advance care planning and end-of-life care preferences for advanced cancer patients and their family members

  • Shin Hye Yoo
  • Jihye Lee
  • Jung Hun Kang
  • Chi Hoon Maeng
  • Yu Jung Kim
  • Eun-Kee Song
  • Youngil Koh
  • Hwan-Jung Yun
  • Hyun-Jeong Shim
  • Jung Hye Kwon
  • Eun Mi Nam
  • EunKyo Kang
  • Jiyeon Choo
  • Young Ho YunEmail author
Original Article
  • 48 Downloads

Abstract

Purpose

Little has been determined regarding the association between patients’ and families’ illness understanding and preferences for medical care. We aimed to evaluate the association of illness understanding with advance care planning (ACP) and preferences for end-of-life care, such as aggressive care, early palliative care (EPC), and hospice care, among advanced cancer patients and their family caregivers.

Methods

Patients were recruited for a prospective cohort study at outpatient and inpatient facilities in nine university hospitals in Korea (n = 150), and their primary family caregivers were also asked to participate (n = 101). Data on ACP and end-of-life care preferences were collected only at baseline in the cohort study with optional questions and were used to analyze these study results.

Results

Patients with illness understanding were more likely to have documented physician orders for life-sustaining treatment (POLSTs) (adjusted odds ratio [aOR] of 4.94) and to have discussed ACP with their families (aOR 2.15) than those who did not. Being expected to live for several months, they were unlikely to prefer active treatment. Caregivers understanding patients’ illness were more likely to write advance directives (ADs) and to discuss ACP; furthermore, they had already discussed ACP with family members. They did not prefer active treatment or life-sustaining treatments when their family members were expected to die within a few weeks. There was no significant association between illness understanding and preferences for EPC.

Conclusion

Accurately recognizing an incurable disease is associated with preferences for more ACP and less aggressive care but not with preferences for EPC or hospice care among both advanced cancer patients and their family caregivers.

Keywords

Advanced cancer Prognosis Caregiver Advance care planning End-of-life care 

Notes

Acknowledgments

We thank Diana S. and other highly qualified editors from American Journal Experts for professional English editing.

Author contributions

All authors contributed to the study conception and design. Material preparation and data collection were performed by Jung Hun Kang, Chi Hoon Maeng, Yu Jung Kim, Eun-Kee Song, Youngil Koh, Hwan-Jung Yun, Hyun-Jeong Shim, Jung Hye Kwon, Eun Mi Nam, Jihye Lee, EunKyo Kang, Jiyeon Choo, and Young Ho Yun. Analysis was performed by Shin Hye Yoo and Jihye Lee. The first draft of the manuscript was written by Shin Hye Yoo, Jihye Lee, and Young Ho Yun, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Funding information

This work was supported by the grant from the Korea Health Technology R&D Project through the Korea Health Industry Development Institute (KHIDI), funded by the Ministry of Health and Welfare, Republic of Korea (grant no.: HC15C1391).

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Statement of informed consent

All procedures performed in this study were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. All provided written informed consent except for the general population, and the study was approved by the institutional review board of each hospital (number: H-1602-142-745). Informed consent was obtained from all individual participants included in the study.

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  • Shin Hye Yoo
    • 1
  • Jihye Lee
    • 2
  • Jung Hun Kang
    • 3
  • Chi Hoon Maeng
    • 4
  • Yu Jung Kim
    • 5
  • Eun-Kee Song
    • 6
  • Youngil Koh
    • 1
  • Hwan-Jung Yun
    • 7
  • Hyun-Jeong Shim
    • 8
  • Jung Hye Kwon
    • 9
  • Eun Mi Nam
    • 10
  • EunKyo Kang
    • 11
  • Jiyeon Choo
    • 11
  • Young Ho Yun
    • 2
    • 11
    • 12
    Email author
  1. 1.Department of Internal MedicineSeoul National University HospitalSeoulSouth Korea
  2. 2.Department of Medical InformaticsSeoul National University College of MedicineSeoulSouth Korea
  3. 3.Department of Internal Medicine, College of MedicineGyeongsang National UniversityJinjuSouth Korea
  4. 4.Division of Medical Oncology-Hematology, Department of Internal MedicineKyung Hee University Hospital, Kyung Hee University College of MedicineSeoulSouth Korea
  5. 5.Department of Internal MedicineSeoul National University Bundang Hospital, Seoul National University College of MedicineSeongnamSouth Korea
  6. 6.Division of Hematology/OncologyChonbuk National University Medical SchoolJeonjuSouth Korea
  7. 7.Department of Internal MedicineChungnam National University HospitalDaejeonSouth Korea
  8. 8.Division of Hematology and Medical Oncology, Department of Internal MedicineChonnam National University School of MedicineHwasunSouth Korea
  9. 9.Department of Internal MedicineKangdong Sacred Heart Hospital, Hallym University College of MedicineSeoulSouth Korea
  10. 10.Department of Internal MedicineEwha Womans University College of MedicineSeoulSouth Korea
  11. 11.Department of Family MedicineSeoul National University HospitalSeoulSouth Korea
  12. 12.Department of Biomedical ScienceSeoul National University College of MedicineSeoulSouth Korea

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