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

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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.

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References

  1. Bray F, Ferlay J, Soerjomataram I, Siegel R, Torre L, Jemal A (2018) Global Cancer Statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin 68:394–424. https://doi.org/10.3322/caac.21492

    Article  PubMed  Google Scholar 

  2. Arevalo JJ, Geijteman ECT, Huisman BAA, Dees MK, Zuurmond WWA, van Zuylen L, van der Heide A, Perez RSGM (2017) Medication use in the last days of life in hospital, hospice, and home settings in the Netherlands. J Palliat Med 21:jpm.2017.0179. https://doi.org/10.1089/jpm.2017.0179

    Article  Google Scholar 

  3. Ferrell B, Temel J, Temin S, Alesi E, Balboni T, Basch EM, Firn J, Paice J, Peppercorn J, Philips T, Stovall E, Zimmermann C, Smith T (2017) Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol 35:96–112. https://doi.org/10.1200/jco.2016.70.1474

    Article  PubMed  Google Scholar 

  4. Kaasa S, Loge JH, Aapro M, Albreht T, Anderson R, Bruera E, Brunelli C, Caraceni A, Cervantes A, Currow DC, Deliens L, Fallon M, Gómez-Batiste X, Grotmol KS, Hannon B, Haugen DF, Higginson IJ, Hjermstad MJ, Hui D, Jordan K, Kurita GP, Larkin PJ, Miccinesi G, Nauck F, Pribakovic R, Rodin G, Sjøgren P, Stone P, Zimmermann C, Lundeby T (2018) Integration of oncology and palliative care: a Lancet Oncology Commission. Lancet Oncol 19:e588–e653. https://doi.org/10.1016/S1470-2045(18)30415-7

    Article  PubMed  Google Scholar 

  5. Fulton J, LeBlanc T, Cutson T, Porter Starr KN, Kamal A, Ramos K, Feiermuth C, McDuffie J, Kosinski A, Adam S, Nagi A, Williams JW (2018) Integrated outpatient palliative care for patients with advanced cancer: a systematic review and meta-analysis. Palliat Med 33:123–134. https://doi.org/10.1177/0269216318812633

    Article  PubMed  PubMed Central  Google Scholar 

  6. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VAV, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ, Bilderman C, Jacobsen J, Pirl WF, Billings A, Lynch TJ (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733–742. https://doi.org/10.1056/NEJMoa1000678

    Article  CAS  PubMed  Google Scholar 

  7. Hui D, Kim YJ, Park JC, Zhang Y, Strasser F, Cherny N, Kaasa S, Davis MP, Bruera E (2015) Integration of oncology and palliative care: a systematic review. Oncologist 20:77–83. https://doi.org/10.1634/theoncologist.2014-0312

    Article  PubMed  Google Scholar 

  8. Haun MW, Estel S, Rücker G, Friederich H-C, Villalobos M, Thomas M, Hartmann M (2017) Early palliative care for adults with advanced cancer ( review ). Cochrane Database Syst Rev. https://doi.org/10.1002/14651858.CD011129.pub2.www.cochranelibrary.com

  9. Geerse OP, Stegmann ME, Kerstjens HAM, Hiltermann TJN, Bakitas M, Zimmermann C, Deal AM, Brandenbarg D, Berger MY, Berendsen AJ (2018) Effects of shared decision making on distress and health care utilization among patients with lung cancer: a systematic review. J Pain Symptom Manag 56:975–987.e5. https://doi.org/10.1016/j.jpainsymman.2018.08.011

    Article  Google Scholar 

  10. Back AL, Young JP, Mccown E, Engelberg RA, Vig EK, Reinke LF, Wenrich MD, Mcgrath BB, Curtis JR (2010) Abandoment at the end of life from patient and clinical perspectives. Arch Intern Med 169:474–479. https://doi.org/10.1001/archinternmed.2008.583.Abandonment

    Article  Google Scholar 

  11. Han PKJ, Arnold RM (2005) Palliative care services, patient abandonment, and the scope of physicians’ responsibilities in end-of-life care. J Palliat Med 8:1238–1245. https://doi.org/10.1089/jpm.2005.8.1238

    Article  PubMed  Google Scholar 

  12. American Society of Clinical Oncology (ASCO) (1998) Cancer care during the last phase of life. J Clin Oncol 16:1986–1996

    Article  Google Scholar 

  13. Rietjens JAC, Sudore RL, Connolly M, van Delden JJ, Drickamer MA, Droger M, van der Heide A, Heyland DK, Houttekier D, Janssen DJA, Orsi L, Payne S, Seymour J, Jox RJ, Korfage IJ (2017) Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol 18:e543–e551. https://doi.org/10.1016/S1470-2045(17)30582-X

    Article  PubMed  Google Scholar 

  14. Houben CHM, Spruit MA, Groenen MTJ, Wouters EFM, Janssen DJA (2014) Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc 15:477–489. https://doi.org/10.1016/j.jamda.2014.01.008

    Article  PubMed  Google Scholar 

  15. Vanderhaeghen B, Van Beek K, De Pril M, Bossuyt I, Menten J, Rober P (2018) What do hospitalists experience as barriers and helpful factors for having ACP conversations? A systematic qualitative evidence synthesis. Perspect Public Health 139:97–105. https://doi.org/10.1177/1757913918786524

    Article  PubMed  Google Scholar 

  16. Lund S, Richardson A, May C (2015) Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One 10:1–15. https://doi.org/10.1371/journal.pone.0116629

    Article  CAS  Google Scholar 

  17. Johnson S, Butow P, Kerridge I, Tattersall M (2016) Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers. Psychooncology 25:362–386. https://doi.org/10.1002/pon.3926

    Article  PubMed  Google Scholar 

  18. Olsman E, Leget C, Onwuteaka-Philipsen B, Willems D (2014) Should palliative care patients’ hope be truthful, helpful or valuable? An interpretative synthesis of literature describing healthcare professionals’ perspectives on hope of palliative care patients. Palliat Med 28:59–70. https://doi.org/10.1177/0269216313482172

    Article  PubMed  Google Scholar 

  19. Buiting HM, Rurup ML, Wijsbek H, Van Zuylen L, Den Hartogh G (2011) Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study. BMJ 342. https://doi.org/10.1136/bmj.d1933

  20. Geerse OP, Kavanagh J, Fromme EK, Hiltermann TJN, Berendsen AJ, Bernacki RE, Lamas DJ, Paladino J, Block SD, Sanders JJ, Henrich NJ (2019) A qualitative study of serious illness conversations in patients with advanced cancer. J Palliat Med XX:1–9. https://doi.org/10.1089/jpm.2018.0487

    Article  Google Scholar 

  21. Paladino J, Bernacki R, Neville BA, Kavanagh J, Miranda SP, Palmor M, Lakin J, Desai M, Lamas D, Sanders JJ, Gass J, Henrich N, Lipsitz S, Fromme E, Gawande AA, Block SD (2019) Evaluating an intervention to improve communication between oncology clinicians and patients with life-limiting Cancer. JAMA Oncol. https://doi.org/10.1001/jamaoncol.2019.0292

  22. Waller A, Turon H, Bryant J, Zucca A, Evans T, Sanson-Fisher R (2019) Medical oncology outpatients’ preferences and experiences with advanced care planning: a cross-sectional study. BMC Cancer 19:1–8. https://doi.org/10.1186/s12885-019-5272-6

    Article  Google Scholar 

  23. Survey Monkey (n.d.) https://www.surveymonkey.com/

  24. IBM Corp (n.d.) Released 2017. IBM SPSS statistics for windows, version 25.0. IBM Corp., Armonk

  25. LeBlanc TW, Fish LJ, Bloom CT, El-Jawahri A, Davis DM, Locke SC, Steinhauser KE, Pollak KI (2017) Patient experiences of acute myeloid leukemia: a qualitative study about diagnosis, illness understanding, and treatment decision-making. Psychooncology 26:2063–2068. https://doi.org/10.1002/pon.4309

    Article  PubMed  Google Scholar 

  26. Hickner J, Kent S, Naragon P, Hunt L (2007) Physicians’ and patients’ views of cancer care by family physicians: a report from the American Academy of Family Physicians National Research Network. Fam Med 39:126–131

    PubMed  Google Scholar 

  27. Nederlands Huisartsen Genootschap. Website: Oncologische zorg in de huisartsenpraktijk NHG-standpunt (2014) https://www.nhg.org/themas/publicaties/

  28. Berkey F, Wiedemer J, Vithalani N (2018) Delivering bad or life-altering news. Am Fam Physician 98:99–104

    PubMed  Google Scholar 

  29. Schellevis FG, Westert GP, De Bakker DH (2005) The actual role of general practice in the Dutch health-care system: results of the Second Dutch National Survey of General Practice. J Public Health (Bangkok) 13:265–269

    Article  Google Scholar 

  30. Pivodic L, Pardon K, Morin L, Addington-Hall J, Miccinesi G, Cardenas-Turanzas M, Onwuteaka-Philipsen B, Naylor W, Ramos MR, Van den Block L, Wilson DM, Loucka M, Csikos A, Rhee YJ, Teno J, Deliens L, Houttekier D, Cohen J, De Groote ZD, Payne S, Brearley S, Caraceni A, Pasman R, Francke A, Harding R, Higginson IJ, Kaasa S, Linden K, Pautex S (2016) Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries. J Epidemiol Community Health 70:17–24. https://doi.org/10.1136/jech-2014-205365

    Article  PubMed  Google Scholar 

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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

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Authors and Affiliations

  1. Department of General Practice and Elderly Care Medicine, University of Groningen, University Medical Center Groningen, Antonius Deusinglaan 1, FA 21, 9713 AV, Groningen, The Netherlands

    Mariken E. Stegmann, Olaf P. Geerse & Saskia F. A. Duijts

  2. Department of Pulmonary Diseases and Tuberculosis, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands

    Olaf P. Geerse

  3. Dutch Federation of Cancer Patients Organisations (Nederlandse Federatie van Kankerpatiëntorganisaties, NFK), Utrecht, The Netherlands

    Dorien Tange & Vivian Engelen

  4. Dutch Breast Cancer Association (Borstkankervereniging Nederland, BVN), Utrecht, The Netherlands

    Carol Richel

  5. The Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands

    Linda Brom & Saskia F. A. Duijts

  6. Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands

    Linda Brom

  7. Department of Public and Occupational Health, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands

    Saskia F. A. Duijts

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  1. Mariken E. Stegmann
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Correspondence to Mariken E. Stegmann.

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Mariken E. Stegmann and Olaf P. Geerse are shared first authorship

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Stegmann, M.E., Geerse, O.P., Tange, D. et al. Experiences and needs of patients with incurable cancer regarding advance care planning: results from a national cross-sectional survey. Support Care Cancer 28, 4211–4217 (2020). https://doi.org/10.1007/s00520-019-05285-z

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