Skip to main content

Advertisement

SpringerLink
Log in

Triadic treatment decision-making in advanced cancer: a pilot study of the roles and perceptions of patients, caregivers, and oncologists

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

The research on cancer treatment decision-making focuses on dyads; the full “triad” of patients, oncologists, and caregivers remains largely unstudied. We investigated how all members of this triad perceive and experience decisions related to treatment for advanced cancer.

Methods

At an academic cancer center, we enrolled adult patients with advanced gastrointestinal or hematological malignancies, their caregivers, and their oncologists. Triad members completed a semi-structured qualitative interview and a survey measuring decisional conflict and perceived influence of the other triad members on treatment decisions.

Results

Seventeen patients, 14 caregivers, and 10 oncologists completed the study. Patients and caregivers reported little decisional regret and voiced high satisfaction with their decisions, but levels of decisional conflict were high. We found sizeable disagreement among triad members’ perceptions and preferences. For example, patients and oncologists disagreed about the caregiver’s influence on the decision 56% of the time. In addition, many patients and caregivers preferred to defer to their oncologist about treatment decisions, felt like no true decision existed, and disagreed with their oncologist about how many treatment options had been presented.

Conclusions

Patients, caregivers, and oncologists have discordant perceptions of the cancer treatment decision-making process, and bring different preferences about how they want to make decisions. These data suggest that oncologists should assess patients’ and caregivers’ decisional preferences, explicitly signal that a decision needs to be made whenever approaching an important crossroads in treatment and ensure that patients and caregivers understand the full range of presented options.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Jansen SJ, Otten W, van de Velde CJ, Nortier JW, Stiggelbout AM (2004) The impact of the perception of treatment choice on satisfaction with treatment, experienced chemotherapy burden and current quality of life. Br J Cancer 91(1):56–61. https://doi.org/10.1038/sj.bjc.6601903

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  2. LeBlanc A, Kenny DA, O'Connor AM, Légaré F (2009) Decisional conflict in patients and their physicians: a dyadic approach to shared decision making. Med Decis Mak 29(1):61–68

    Article  Google Scholar 

  3. Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S (2001) The prevalence of psychological distress by cancer site. Psychooncology 10(1):19–28

    Article  CAS  PubMed  Google Scholar 

  4. Gao W, Bennett MI, Stark D, Murray S, Higginson IJ (2010) Psychological distress in cancer from survivorship to end of life care: prevalence, associated factors and clinical implications. Eur J Cancer 46(11):2036–2044. https://doi.org/10.1016/j.ejca.2010.03.033

    Article  PubMed  Google Scholar 

  5. Carlson LE, Groff SL, Maciejewski O, Bultz BD (2010) Screening for distress in lung and breast cancer outpatients: a randomized controlled trial. J Clin Oncol 28(33):4884–4891. https://doi.org/10.1200/JCO.2009.27.3698

    Article  PubMed  Google Scholar 

  6. Carlson LE, Waller A, Mitchell AJ (2012) Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol 30(11):1160–1177. https://doi.org/10.1200/JCO.2011.39.5509

    Article  PubMed  Google Scholar 

  7. Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL, Schrag D (2012) Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 367(17):1616–1625. https://doi.org/10.1056/NEJMoa1204410

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  8. Janz NK, Wren PA, Copeland LA, Lowery JC, Goldfarb SL, Wilkins EG (2004) Patient-physician concordance: preferences, perceptions, and factors influencing the breast cancer surgical decision. J Clin Oncol 22(15):3091–3098. https://doi.org/10.1200/JCO.2004.09.069

    Article  PubMed  Google Scholar 

  9. Hotta K, Kiura K, Takigawa N, Yoshioka H, Hayashi H, Fukuyama H, Nishiyama A, Yokoyama T, Kuyama S, Umemura S, Kato Y, Nogami N, Segawa Y, Yasugi M, Tabata M, Tanimoto M (2010) Desire for information and involvement in treatment decisions: lung cancer patients’ preferences and their physicians' perceptions: results from Okayama Lung Cancer Study Group Trial 0705. J Thorac Oncol 5(10):1668–1672. https://doi.org/10.1097/JTO.0b013e3181f1c8cb

    Article  PubMed  Google Scholar 

  10. Pearcy R, Waldron D, O'Boyle C, MacDonagh R (2008) Proxy assessment of quality of life in patients with prostate cancer: how accurate are partners and urologists? J R Soc Med 101(3):133–138. https://doi.org/10.1258/jrsm.2008.081002

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  11. Eggly S, Penner LA, Greene M, Harper FW, Ruckdeschel JC, Albrecht TL (2006) Information seeking during “bad news” oncology interactions: question asking by patients and their companions. Soc Sci Med 63(11):2974–2985. https://doi.org/10.1016/j.socscimed.2006.07.012

    Article  PubMed  Google Scholar 

  12. Pardon K, Deschepper R, Stichele RV, Bernheim JL, Mortier F, Bossuyt N, Schallier D, Germonpre P, Galdermans D, Van Kerckhoven W, Deliens L, Consortium E (2010) Preferences of patients with advanced lung cancer regarding the involvement of family and others in medical decision-making. J Palliat Med 13(10):1199–1203. https://doi.org/10.1089/jpm.2010.0100

    Article  PubMed  Google Scholar 

  13. Forsyth R, Scanlan C, Carter SM, Jordens CF, Kerridge I (2011) Decision making in a crowded room: the relational significance of social roles in decisions to proceed with allogeneic stem cell transplantation. Qual Health Res 21(9):1260–1272

    Article  PubMed  Google Scholar 

  14. Zhang AY, Siminoff LA (2003) The role of the family in treatment decision making by patients with cancer. Oncol Nurs Forum 30(6):1022–1028. https://doi.org/10.1188/03.ONF.1022-1028

    Article  PubMed  Google Scholar 

  15. Ende J, Kazis L, Ash A, Moskowitz MA (1989) Measuring patients’ desire for autonomy. J Gen Intern Med 4(1):23–30

    Article  CAS  PubMed  Google Scholar 

  16. Shalowitz DI, Garrett-Mayer E, Wendler D (2006) The accuracy of surrogate decision makers: a systematic review. Arch Intern Med 166(5):493–497. https://doi.org/10.1001/archinte.166.5.493

    Article  PubMed  Google Scholar 

  17. Street RL, Gordon HS (2008) Companion participation in cancer consultations. Psychooncology 17(3):244–251. https://doi.org/10.1002/pon.1225

    Article  PubMed  Google Scholar 

  18. Prigerson HG, Cherlin E, Chen JH, Kasl SV, Hurzeler R, Bradley EH (2003) The Stressful Caregiving Adulteactions to Experiences of Dying (SCARED) scale: a measure for assessing caregiver exposure to distress in terminal care. Am J Geriatr Psychiatry 11(3):309–319

    Article  PubMed  Google Scholar 

  19. Butow PN, Price MA, Bell ML, Webb PM, deFazio A, Australian Ovarian Cancer Study G, Australian Ovarian Cancer Study Quality Of Life Study I, Friedlander M (2014) Caring for women with ovarian cancer in the last year of life: a longitudinal study of caregiver quality of life, distress and unmet needs. Gynecol Oncol 132(3):690–697. https://doi.org/10.1016/j.ygyno.2014.01.002

    Article  PubMed  Google Scholar 

  20. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK, Prigerson HG (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300(14):1665–1673. https://doi.org/10.1001/jama.300.14.1665

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  21. Pistrang N, Barker C (1995) The partner relationship in psychological response to breast cancer. Soc Sci Med 40(6):789–797

    Article  CAS  PubMed  Google Scholar 

  22. Torke AM, Sachs GA, Helft PR, Montz K, Hui SL, Slaven JE, Callahan CM (2014) Scope and outcomes of surrogate decision making among hospitalized older adults. JAMA Intern Med 174(3):370–377. https://doi.org/10.1001/jamainternmed.2013.13315

    Article  PubMed  PubMed Central  Google Scholar 

  23. Porter LS, Keefe FJ, Hurwitz H, Faber M (2005) Disclosure between patients with gastrointestinal cancer and their spouses. Psycho-Oncology 14(12):1030–1042

    Article  PubMed  Google Scholar 

  24. Porter LS, Keefe FJ, Baucom DH, Hurwitz H, Moser B, Patterson E, Kim HJ (2009) Partner-assisted emotional disclosure for patients with gastrointestinal cancer. Cancer 115(S18):4326–4338

    Article  PubMed  PubMed Central  Google Scholar 

  25. Joseph-Williams N, Elwyn G, Edwards A (2014) Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns 94(3):291–309

    Article  PubMed  Google Scholar 

  26. Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, Cording E, Tomson D, Dodd C, Rollnick S, Edwards A, Barry M (2012) Shared decision making: a model for clinical practice. J Gen Intern Med 27(10):1361–1367. https://doi.org/10.1007/s11606-012-2077-6

    Article  PubMed  PubMed Central  Google Scholar 

  27. O'Connor AM (1995) Validation of a decisional conflict scale. Med Decis Mak 15(1):25–30

    Article  Google Scholar 

  28. Holmes-Rovner M, Kroll J, Schmitt N, Rovner DR, Breer ML, Rothert ML, Padonu G, Talarczyk G (1996) Patient satisfaction with health care decisions the satisfaction with decision scale. Med Decis Mak 16(1):58–64

    Article  CAS  Google Scholar 

  29. Brehaut JC, O'Connor AM, Wood TJ, Hack TF, Siminoff L, Gordon E, Feldman-Stewart D (2003) Validation of a decision regret scale. Med Decis Mak 23(4):281–292

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Duke Cancer Institute, Box 2715, DUMC, Durham, NC, 27710, USA

    Thomas W. LeBlanc & Kathryn I. Pollak

  2. Division of Hematological Malignancies and Cellular Therapy, Department of Medicine, Duke University School of Medicine, Durham, NC, USA

    Thomas W. LeBlanc

  3. Department of Sociology, Duke University, Durham, NC, USA

    Nick Bloom

  4. Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, NC, USA

    Steven P. Wolf

  5. School of Dentistry, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Sarah G. Lowman

  6. Department of Community and Family Medicine, Duke University School of Medicine, Durham, NC, USA

    Kathryn I. Pollak

  7. Center for Health Services Research in Primary Care, Durham VA Medical Center, Durham, NC, USA

    Karen E. Steinhauser

  8. Department of Medicine, Division of General Internal Medicine, Palliative Care Section, Duke University School of Medicine, Durham, NC, USA

    Karen E. Steinhauser

  9. Center for the Study of Aging and Human Development, Duke University, Durham, NC, USA

    Karen E. Steinhauser

  10. James B. Duke Professor of Psychology and Behavioral Economics, Duke University, Durham, NC, USA

    Dan Ariely

  11. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA

    James A. Tulsky

  12. Division of Palliative Medicine, Department of Medicine, Brigham and Women’s Hospital, Boston, MA, USA

    James A. Tulsky

Authors
  1. Thomas W. LeBlanc
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Nick Bloom
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Steven P. Wolf
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Sarah G. Lowman
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Kathryn I. Pollak
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Karen E. Steinhauser
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Dan Ariely
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. James A. Tulsky
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Thomas W. LeBlanc.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

LeBlanc, T.W., Bloom, N., Wolf, S.P. et al. Triadic treatment decision-making in advanced cancer: a pilot study of the roles and perceptions of patients, caregivers, and oncologists. Support Care Cancer 26, 1197–1205 (2018). https://doi.org/10.1007/s00520-017-3942-y

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-017-3942-y

Keywords

Search

Navigation