Understanding Distress in Advanced Cancer Patients: A Qualitative Analysis of the P-COCC Values

Background:

Person-Centered Oncologic Care and Choices (P-COCC) is a validated ACP paradigm of a values-focused patient (pt) interview augmented by an informational care goals video. In a randomized trial (Epstein et al ASCO 2017), P-COCC was acceptable but more distressing than usual care or video alone. To ask why, we qualitatively analyzed P-COCC interviews.

Methods:

Thematic content analysis was performed on transcripts of audio-recorded values interviews of advanced gastrointestinal cancer pts. For reliability and analytic rigor, 2 reviewers met in weekly iterative consensus rounds. Primary analysis phase consisted of identification of key domains to guide coding, line-by-line coding with ATLAS.ti software to generate a codebook, and quality assurance. Secondary analysis phase consisted of independent review and categorization of codes, followed by 18 successive consensus meetings to identify distinct themes.

Results:

From the P-COCC narratives of 48 pts, 109 codes were generated and categorized into 15 values code families. Thematic consensus analysis resulted in 8 distinct themes across domains of medical treatment preferences, communication needs, and psycho-social supports: 1) most pts favored limited or comfort care; 2) life-prolonging care was associated with a negative emotional response (e.g. fear of artificial existence, poor life quality, value-discordant care); 3) the video was generally well-accepted and informative, but pts questioned its appropriateness in relation to their state of illness and readiness to engage in ACP; 4) pts trusted the oncology team; 5) concerns (e.g. fear, uncertainty) about illness and prognosis drove a desire for open communication and being understood; 6) relationships with loved ones provided meaning to pts’ lives; 7) religion and spirituality enhanced inner strength and support; and 8) pts valued maintaining an identity, keeping agency, and living life outside of cancer.

Conclusions:

In advanced cancer, addressing core values can increase distress, which seems brought on by sensitive but pertinent ACP topics on end-of-life medical care. Future work should address how psycho-social supports can be leveraged during the ACP process to optimally inform and guide pts.