Advertisement

A mixed methods analysis of patients’ advance care planning values in outpatient oncology: Person-Centered Oncologic Care and Choices (P-COCC)

  • Rajiv Agarwal
  • Elyse Shuk
  • Danielle Romano
  • Margaux Genoff
  • Yuelin Li
  • Eileen M. O’Reilly
  • William Breitbart
  • Angelo E. Volandes
  • Andrew S. EpsteinEmail author
Original Article

Abstract

Purpose

Person-Centered Oncologic Care and Choices (P-COCC) combines an advance care planning (ACP) value-focused patient interview with a care goal video decision aid. Our randomized study showed that P-COCC was acceptable but increased participant distress, compared with video-alone and usual care study arms. This mixed methods approach explores the ACP values in the P-COCC arm and their relationship to the distress phenomenon.

Methods

Qualitative thematic analysis of the 46 audio-recorded P-COCC interview transcripts with advanced gastrointestinal cancer patients was performed by multiple reviewers. Quantitative (Likert scale) changes in ACP values were compared across study arms. ACP themes and value change were analyzed in participants with increased distress.

Results

Transcript analysis resulted in thematic saturation and identified eight distinct themes on ACP values relating to end-of-life wishes, communication needs, and psychosocial supports. Of 98 participants (33 P-COCC, 43 videos, 22 usual care) who completed the change in value measure, there was no difference detected with P-COCC compared with either video (p = 0.052) or usual care (p = 0.105) arms alone, but P-COCC led to a frequency distribution of more change in personal values compared with the other study arms combined (p = 0.043). Among the subset of P-COCC participants with increased distress, there was no statistical relationship with change in values.

Conclusions

The ACP paradigm P-COCC both informs and supports patients in individualized, value-based decision-making. Distress is not associated with changes in ACP values and may be a necessary, at least transient, byproduct of discussing sensitive but pertinent topics about end-of-life medical care.

Keywords

Advance care planning Cancer Communication Goals Patient participation 

Notes

Acknowledgments

We thank the patients and families, as well as the colleagues who referred patients to the trial. The colleagues include Drs. Geoffrey Ku, Yelena Janjigian, Leonard Saltz, Anna Varghese, James Harding, Zsofia Stadler, Diane Reidy, David Ilson, Neil Segal, Armin Shahrokni, Rona Yaeger, Sree Chalasani, Monica Shcherba, and Kenneth Yu.

Funding

This study was supported by the National Palliative Care Research Center (through a 2013 Career Development Award to Andrew S. Epstein, MD). The research was also funded in part through the NIH/NCI Cancer Center Support Grant P30 CA008748.

Compliance with ethical standards

The study was reviewed by the Institutional Review Board at MSK.

Conflict of interest

Dr. Epstein receives royalties from Up-to-Date for reviewing GI Medical Oncology and Palliative Medicine topic reviews. All other authors declare that they have no conflict of interest.

References

  1. 1.
    Gillick MR (2004) Advance care planning. N Engl J Med 350(1):7–8.  https://doi.org/10.1056/NEJMp038202 CrossRefGoogle Scholar
  2. 2.
    Tulsky JA (2005) Beyond advance directives: importance of communication skills at the end of life. Jama 294(3):359–365.  https://doi.org/10.1001/jama.294.3.359 CrossRefGoogle Scholar
  3. 3.
    Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, Matlock DD, Rietjens JAC, Korfage IJ, Ritchie CS, Kutner JS, Teno JM, Thomas J, McMahan RD, Heyland DK (2017) Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manag 53(5):821–832.e821.  https://doi.org/10.1016/j.jpainsymman.2016.12.331 CrossRefGoogle Scholar
  4. 4.
    Silveira MJ, Kim SY, Langa KM (2010) Advance directives and outcomes of surrogate decision making before death. N Engl J Med 362(13):1211–1218.  https://doi.org/10.1056/NEJMsa0907901 CrossRefGoogle Scholar
  5. 5.
    Mack JW, Cronin A, Keating NL, Taback N, Huskamp HA, Malin JL, Earle CC, Weeks JC (2012) Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol Off J Am Soc Clin Oncol 30(35):4387–4395.  https://doi.org/10.1200/jco.2012.43.6055 CrossRefGoogle Scholar
  6. 6.
    Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG (2010) End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol Off J Am Soc Clin Oncol 28(7):1203–1208.  https://doi.org/10.1200/jco.2009.25.4672 CrossRefGoogle Scholar
  7. 7.
    Zhang B, Wright AA, Huskamp HA, Nilsson ME, Maciejewski ML, Earle CC, Block SD, Maciejewski PK, Prigerson HG (2009) Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med 169(5):480–488.  https://doi.org/10.1001/archinternmed.2008.587 CrossRefGoogle Scholar
  8. 8.
    Narang AK, Wright AA, Nicholas LH (2015) Trends in advance care planning in patients with cancer: results from a national longitudinal survey. JAMA Oncol 1(5):601–608.  https://doi.org/10.1001/jamaoncol.2015.1976 CrossRefGoogle Scholar
  9. 9.
    Tulsky JA, Beach MC, Butow PN, Hickman SE, Mack JW, Morrison RS, Street RL Jr, Sudore RL, White DB, Pollak KI (2017) A research agenda for communication between health care professionals and patients living with serious illness. JAMA Intern Med 177(9):1361–1366.  https://doi.org/10.1001/jamainternmed.2017.2005 CrossRefGoogle Scholar
  10. 10.
    Schenker Y, White D, Rosenzweig M, Chu E, Moore C, Ellis P, Nikolajski P, Ford C, Tiver G, McCarthy L, Arnold R (2015) Care management by oncology nurses to address palliative care needs: a pilot trial to assess feasibility, acceptability, and perceived effectiveness of the CONNECT intervention. J Palliat Med 18(3):232–240.  https://doi.org/10.1089/jpm.2014.0325 CrossRefGoogle Scholar
  11. 11.
    Goldberg SL, Pecora AL, Contreras J, DeMarco KE, Paramanathan D, DeVincenzo V, Schultz E, Choi K (2016) A patient-reported outcome instrument to facilitate timing of end-of-life discussions among patients with advanced cancers. J Palliat Med 19(10):1092–1097.  https://doi.org/10.1089/jpm.2015.0459 CrossRefGoogle Scholar
  12. 12.
    Rietjens JA, Korfage IJ, Dunleavy L, Preston NJ, Jabbarian LJ, Christensen CA, de Brito M, Bulli F, Caswell G, Cerv B, van Delden J, Deliens L, Gorini G, Groenvold M, Houttekier D, Ingravallo F, Kars MC, Lunder U, Miccinesi G, Mimic A, Paci E, Payne S, Polinder S, Pollock K, Seymour J, Simonic A, Johnsen AT, Verkissen MN, de Vries E, Wilcock A, Zwakman M, van der Heide Pl A (2016) Advance care planning--a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study. BMC Cancer 16:264.  https://doi.org/10.1186/s12885-016-2298-x CrossRefGoogle Scholar
  13. 13.
    Rocque GB, Dionne-Odom JN, Sylvia Huang CH, Niranjan SJ, Williams CP, Jackson BE, Halilova KI, Kenzik KM, Bevis KS, Wallace AS, Lisovicz N, Taylor RA, Pisu M, Partridge EE, Butler TW, Briggs LA, Kvale EA (2017) Implementation and impact of patient lay navigator-led advance care planning conversations. J Pain Symptom Manag 53(4):682–692.  https://doi.org/10.1016/j.jpainsymman.2016.11.012 CrossRefGoogle Scholar
  14. 14.
    Sudore RL, Boscardin J, Feuz MA, McMahan RD, Katen MT, Barnes DE (2017) Effect of the PREPARE website vs an easy-to-read advance directive on advance care planning documentation and engagement among veterans: a randomized clinical trial. JAMA Intern Med 177(8):1102–1109.  https://doi.org/10.1001/jamainternmed.2017.1607 CrossRefGoogle Scholar
  15. 15.
    Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M (2005) Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol Off J Am Soc Clin Oncol 23(24):5520–5525.  https://doi.org/10.1200/jco.2005.08.391 CrossRefGoogle Scholar
  16. 16.
    Breitbart W, Rosenfeld B, Pessin H, Applebaum A, Kulikowski J, Lichtenthal WG (2015) Meaning-centered group psychotherapy: an effective intervention for improving psychological well-being in patients with advanced cancer. J Clin Oncol Off J Am Soc Clin Oncol 33(7):749–754.  https://doi.org/10.1200/jco.2014.57.2198 CrossRefGoogle Scholar
  17. 17.
    Bernacki R, Hutchings M, Vick J, Smith G, Paladino J, Lipsitz S, Gawande AA, Block SD (2015) Development of the serious illness care program: a randomised controlled trial of a palliative care communication intervention. BMJ Open 5(10):e009032.  https://doi.org/10.1136/bmjopen-2015-009032 CrossRefGoogle Scholar
  18. 18.
    Epstein AS, O'Reilly EM, Shuk E, Breitbart W, Shah MA, Ly M, Tayler R, Volandes AE (2016) Development of an advance care planning paradigm for advanced cancer: person-centered oncologic care and choices (P-COCC). Psycho-oncology 26:866–869.  https://doi.org/10.1002/pon.4167 CrossRefGoogle Scholar
  19. 19.
    Epstein AS, O'Reilly EM, Shuk E, Romano D, Li Y, Breitbart W, Volandes AE (2018) A randomized trial of acceptability and effects of values-based advance care planning in outpatient oncology: person-centered oncologic care and choices (P-COCC). J Pain Symptom Manag 56:169–177.e1.  https://doi.org/10.1016/j.jpainsymman.2018.04.009 CrossRefGoogle Scholar
  20. 20.
    Distress management (2003) Clinical practice guidelines. J Natl Compr Cancer Netw 1(3):344–374CrossRefGoogle Scholar
  21. 21.
    Holland JC, Jacobsen PB, Riba MB (2001) NCCN: distress management. Cancer Control 8(6 Suppl 2):88–93Google Scholar
  22. 22.
    Kvale S, Brinkmann S (2015) InterViews: learning the craft of qualitative research interviewing, 3rd edn. SAGE Publications, Thousand OaksGoogle Scholar
  23. 23.
    Green J, Thorogood N (2018) Qualitative methods for health research. SAGE Publications, LondonGoogle Scholar
  24. 24.
    Patton MQ, Fund RECM (2002) Qualitative research & evaluation methods. SAGE Publications, Thousand OaksGoogle Scholar
  25. 25.
    Creswell JW (2014) Research design: qualitative, quantitative, and mixed methods approaches. SAGE Publications, Thousand OaksGoogle Scholar
  26. 26.
    Denzin NK (2017) The research act: a theoretical introduction to sociological methods. Taylor & Francis, New YorkCrossRefGoogle Scholar
  27. 27.
    Morse JM, Barrett M, Mayan M, Olson K, Spiers J (2002) Verification strategies for establishing reliability and validity in qualitative research. Int J Qual Methods 1(2):13–22.  https://doi.org/10.1177/160940690200100202 CrossRefGoogle Scholar
  28. 28.
    Friese S (2014) Qualitative data analysis with ATLAS.ti. SAGE Publications, LondonGoogle Scholar
  29. 29.
    Bernard HR (2011) Research methods in anthropology: qualitative and quantitative approaches. AltaMira Press, LanhamGoogle Scholar
  30. 30.
    Boyatzis RE (1998) Transforming qualitative information: thematic analysis and code development. SAGE Publications, Thousand OaksGoogle Scholar
  31. 31.
    Creswell JW, Poth CN (2016) Qualitative inquiry and research design: choosing among five approaches. SAGE Publications, Thousand OaksGoogle Scholar
  32. 32.
    Saldana J (2012) The coding manual for qualitative researchers. SAGE Publications, LondonGoogle Scholar
  33. 33.
    Hall S, Goddard C, Speck PW, Martin P, Higginson IJ (2013) “It makes you feel that somebody is out there caring”: a qualitative study of intervention and control participants’ perceptions of the benefits of taking part in an evaluation of dignity therapy for people with advanced cancer. J Pain Symptom Manag 45(4):712–725.  https://doi.org/10.1016/j.jpainsymman.2012.03.009 CrossRefGoogle Scholar
  34. 34.
    Pope C, Ziebland S, Mays N (2000) Qualitative research in health care. Analysing qualitative data. BMJ (Clin Res Ed) 320(7227):114–116CrossRefGoogle Scholar
  35. 35.
    Epstein AS, Shuk E, O'Reilly EM, Gary KA, Volandes AE (2015) We have to discuss it’: cancer patients’ advance care planning impressions following educational information about cardiopulmonary resuscitation. Psycho-oncology 24(12):1767–1773.  https://doi.org/10.1002/pon.3786 CrossRefGoogle Scholar
  36. 36.
    O'Sullivan EM, Higginson IJ (2016) ‘I’ll continue as long as I can, and die when I can’t help it’: a qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC). BMJ Support Palliat Care 6(1):43–51.  https://doi.org/10.1136/bmjspcare-2014-000664 CrossRefGoogle Scholar
  37. 37.
    Johnson SB, Butow PN, Kerridge I, Tattersall MH (2017) What do patients with cancer and their families value most at the end of life? A critical analysis of advance care planning. Int J Palliat Nurs 23(12):596–604.  https://doi.org/10.12968/ijpn.2017.23.12.596 CrossRefGoogle Scholar
  38. 38.
    Cottingham AH, Cripe LD, Rand KL, Frankel RM (2018) “My future is now”: a qualitative study of persons living with advanced cancer. Am J Hosp Palliat Care 35(4):640–646.  https://doi.org/10.1177/1049909117734826 CrossRefGoogle Scholar
  39. 39.
    Enzinger AC, Zhang B, Schrag D, Prigerson HG (2015) Outcomes of prognostic disclosure: associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. J Clin Oncol Off J Am Soc Clin Oncol 33(32):3809–3816.  https://doi.org/10.1200/jco.2015.61.9239 CrossRefGoogle Scholar
  40. 40.
    Nipp RD, Greer JA, El-Jawahri A, Moran SM, Traeger L, Jacobs JM, Jacobsen JC, Gallagher ER, Park ER, Ryan DP, Jackson VA, Pirl WF, Temel JS (2017) Coping and prognostic awareness in patients with advanced cancer. J Clin Oncol Off J Am Soc Clin Oncol 35(22):2551–2557.  https://doi.org/10.1200/jco.2016.71.3404 CrossRefGoogle Scholar
  41. 41.
    Green MJ, Schubart JR, Whitehead MM, Farace E, Lehman E, Levi BH (2015) Advance care planning does not adversely affect hope or anxiety among patients with advanced cancer. J Pain Symptom Manag 49(6):1088–1096.  https://doi.org/10.1016/j.jpainsymman.2014.11.293 CrossRefGoogle Scholar
  42. 42.
    Jacobsen PB, Donovan KA, Trask PC, Fleishman SB, Zabora J, Baker F, Holland JC (2005) Screening for psychologic distress in ambulatory cancer patients. Cancer 103(7):1494–1502.  https://doi.org/10.1002/cncr.20940 CrossRefGoogle Scholar
  43. 43.
    Desai AV, Klimek VM, Chow K, Epstein AS, Bernal C, Anderson K, Okpako M, Rawlins-Duell R, Kramer D, Romano D, Goldberg JI, Nelson JE (2018) 1-2-3 project: a quality improvement initiative to normalize and systematize palliative care for all patients with cancer in the outpatient clinic setting. J Oncol Pract 14(12):e775–e785.  https://doi.org/10.1200/jop.18.00346 CrossRefGoogle Scholar

Copyright information

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

Authors and Affiliations

  • Rajiv Agarwal
    • 1
  • Elyse Shuk
    • 1
  • Danielle Romano
    • 1
  • Margaux Genoff
    • 1
  • Yuelin Li
    • 1
  • Eileen M. O’Reilly
    • 1
    • 2
  • William Breitbart
    • 1
    • 2
  • Angelo E. Volandes
    • 3
  • Andrew S. Epstein
    • 1
    • 2
    Email author
  1. 1.Memorial Sloan Kettering Cancer CenterNew YorkUSA
  2. 2.Weill Cornell Medical CollegeNew YorkUSA
  3. 3.Massachusetts General HospitalBostonUSA

Personalised recommendations