Abstract

Advances in cancer treatment have been made through the use of human tumor tissues from patients with refractory disease. Rapid Tissue Donation (RTD) provides an opportunity to gain insight into treatment-resistant cancers by analyzing tissue from primary tumors and metastasis within 24 hours following a patient’s death. The discussion of participation is a delicate process that must consider inherent communication challenges. Prospective patients may perceive their physician’s recruitment efforts for RTD as a sign of loss of hope. Companions may be distressed by the offer. This study examined the decision making of participating in a RTD program for patients with advanced stage lung cancer and their companion. After a physician-guided introduction of the RTD program, participants with stage 4 lung cancer (n=9) and their companions (n=8) were consented to participate in a qualitative, semi-structured interview assessing their decision making process and barriers and benefits of enrolling in the program, perceptions of the RTD brochures and satisfaction with the recruitment process. Companions participated in independent and joint interviews assessing their perceptions of patients’ decision to enroll in the program. Coders reviewed the verbatim transcripts of the interviews and applied qualitative thematic analysis to identify emerging themes. The majority of patients chose to enroll in the RTD program as an opportunity to give back to science and upon learning organ donation was not an option for them. All patients had good relationships with their physician and this was a deciding factor for participation. Patients had limited concerns about participation and wanted to be sure their loved ones were not burdened by the process. Companions had more concerns about logistics but all supported patients’ decisions. All participants were comfortable with the recruiting process and their physician’s initiation and subsequent discussion of the program. Several patients indicated that they did not plan to inform extended family members. Two companions reported feeling distressed during a clinical discussion concerning the patients’ participation. Patients and their companions approved of the brochure’s content, including references to death, but often objected to the use of language depicting cancer as a “battle” or “fight.” Implementation of an RTD program requires monitoring of the complex communication processes that occur at both interpersonal and institutional levels. Additional research during the ongoing accrual process will continue to assess physician perspectives and seek methods honoring the wishes of patients and companions. R21 CA 194932-01 (NCI).

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