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

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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.

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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.

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Authors and Affiliations

  1. Memorial Sloan Kettering Cancer Center, 300 E. 66th Street, Room 1013, New York, NY, 10065, USA

    Rajiv Agarwal, Elyse Shuk, Danielle Romano, Margaux Genoff, Yuelin Li, Eileen M. O’Reilly, William Breitbart & Andrew S. Epstein

  2. Weill Cornell Medical College, New York, NY, USA

    Eileen M. O’Reilly, William Breitbart & Andrew S. Epstein

  3. Massachusetts General Hospital, Boston, MA, USA

    Angelo E. Volandes

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  1. Rajiv Agarwal
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  2. Elyse Shuk
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  4. Margaux Genoff
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  6. Eileen M. O’Reilly
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  9. Andrew S. Epstein
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Correspondence to Andrew S. Epstein.

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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.

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Agarwal, R., Shuk, E., Romano, D. et al. A mixed methods analysis of patients’ advance care planning values in outpatient oncology: Person-Centered Oncologic Care and Choices (P-COCC). Support Care Cancer 28, 1109–1119 (2020). https://doi.org/10.1007/s00520-019-04910-1

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