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Experiences and needs of patients with incurable cancer regarding advance care planning: results from a national cross-sectional survey

  • Mariken E. StegmannEmail author
  • Olaf P. Geerse
  • Dorien Tange
  • Carol Richel
  • Linda Brom
  • Vivian Engelen
  • Saskia F. A. Duijts
Original Article

Abstract

Introduction

Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end-of-life conversations.

Methods

Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared.

Results

Six hundred fifty-four patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1–10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1–10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation.

Conclusion

Care for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services.

Keywords

Cross-sectional Cancer Advance care planning Palliative care End-of-life care Shared decision making 

Notes

Acknowledgments

The authors are deeply grateful to all patients, families, and the organizations (cancer patient organizations, IKNL, Stichting Fibula, KWF Kankerbestrijding, IPSO, Agora, Bureau Morbidee, Pal voor U, Patiëntenfederatie NL, VGVZ, kanker.nl) who provided their support and input throughout this study.

Authorship and data

All authors made a substantial contribution to the concept, design and writing of the manuscript. The authors have full control of all primary data and allow the journal to review the data if requested.

Funding

This study was funded by a PGO-funding (funding agency for organizations for patients and disabled people) of the Ministry of Public Health, Welfare and Sport (VWS) of the Netherlands. The sponsor had no role in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflicts of interest.

Supplementary material

520_2019_5285_MOESM1_ESM.pdf (172 kb)
ESM 1 (PDF 171 kb)

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2020

Authors and Affiliations

  1. 1.Department of General Practice and Elderly Care MedicineUniversity of Groningen, University Medical Center GroningenGroningenThe Netherlands
  2. 2.Department of Pulmonary Diseases and TuberculosisUniversity of Groningen, University Medical Center GroningenGroningenThe Netherlands
  3. 3.Dutch Federation of Cancer Patients Organisations (Nederlandse Federatie van Kankerpatiëntorganisaties, NFK)UtrechtThe Netherlands
  4. 4.Dutch Breast Cancer Association (Borstkankervereniging Nederland, BVN)UtrechtThe Netherlands
  5. 5.The Netherlands Comprehensive Cancer OrganisationUtrechtThe Netherlands
  6. 6.Netherlands Association for Palliative Care (PZNL)Utrechtthe Netherlands
  7. 7.Department of Public and Occupational Health, Amsterdam UMCVrije Universiteit Amsterdam, Amsterdam Public Health Research InstituteAmsterdamThe Netherlands

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