Concordant palliative care delivery in advanced head and neck cancer.

OBJECTIVES: To describe the palliative care consultation practices in an academic head and neck surgery practice. METHODS: This is a retrospective review of a palliative care database and the health record for all palliative care consultations of patients suffering from advanced stage head and neck cancer within a 21-month period. RESULTS: Ten head and neck cancer patients received palliative care consults while on the otolaryngology service. One consultation occurred preoperatively; nine occurred postoperatively, on a median of hospital day 9. At the time of referral, seven patients were in the ICU and three were on a surgical floor. Code status de-escalation occurred in six patients and psycho-socio-spiritual suffering was supported in all consultations. Nine patients died within six months, with a median post-consultation survival of 35 days. Of these, two died in an ICU, five were discharged to hospice, one to a SNF, and one to a LTACH. CONCLUSION: Palliative care consultation in this advanced head and neck cancer cohort was commonly late, however, significant suffering was mitigated following most consults. Palliative care specialists are experts at eliciting patient values, determining acceptable tradeoffs and suffering limitations by employing a shared decision-making process that ends with a patient-centered value-congruent treatment recommendation. Oftentimes, this embraces curative-intent or palliative surgery, along with contingency plans for unacceptable value-incongruent postoperative outcomes. Enhanced awareness of the benefits of embracing concordant palliative care in advanced head and neck cancer patients may help overcome the significant barriers to involving palliative care experts earlier.

Participants and Study Decliners' Perspectives About the Risks of Participating in a Clinical Trial of Whole Genome Sequencing.

An increasing number of individuals are being recruited to whole genome sequencing (WGS) research. When asked hypothetically, the majority of the public express willingness to participate in this type of research, yet little is known about how many individuals will actually consent to research participation or what they perceive the risks to be. The MedSeq Project is a clinical trial exploring WGS in clinical care. We documented primary reason(s) for declining participation and reviewed audio-recorded informed consent sessions to identify participants' concerns. Of 514 individuals recruited, 173 (34%) actively declined, 205 (40%) enrolled, and the remaining 136 (26%) were ineligible, unresponsive or waitlisted. Although the majority of active decliners cited logistical barriers, 40% cited risks related to the ethical, legal, and social implications (ELSI) of WGS research. Participants similarly discussed ELSI-related concerns but felt the potential benefits of participation outweighed the risks. Findings provide insight into the perspectives of potential WGS research participants and identify potential barriers to participation.

Psychosocial Factors Influencing Parental Interest in Genomic Sequencing of Newborns.

BACKGROUND: When parents of newborns are presented with the hypothetical possibility of obtaining genomic sequencing (GS) for their newborn infants immediately after birth, they express substantial interest. This study examined associations between expressed interest in GS and demographic and psychosocial variables some months after birth. METHODS: A total of 1096 parents were enrolled in a study on GS of newborns shortly after the birth of their infants, before discharge from the postpartum floor. Of these parents, 663 (60.5%) completed a follow-up survey 2 to 28 months later that queried their interest in GS for their infant and whether they received worrisome health information during pregnancy, labor, and delivery. They were also administered the Parenting Stress Index. Multivariate logistic regression was used to examine factors associated with interest in GS of newborns. RESULTS: Of parents, 76.1% indicated at least some interest in GS. A 10-point increase on the Parenting Stress Index was associated with an increase in the odds of having some interest in GS (odds ratio: 1.15; 95% confidence interval: 1.01-1.32). Age, gender, race, ethnicity, marital status, education, anxiety, and whether this was the first biological child were not significantly associated with interest in GS. Receiving worrisome health information was associated with greater interest in GS but this did not reach significance (odds ratio: 1.42; 95% confidence interval: 0.95-2.12). CONCLUSIONS: This hypothetical survey study suggests that previous experiences leading to worrisome health information and parenting stress need to be considered when GS is offered. Additional research, currently underway, is exploring factors associated with real-life parental choices around whether to obtain GS of their newborns.