Sarah L. Goff|Nwamaka D. Eneanya|Rebecca G. Feinberg|Michael J. Germain|Lisa Marr|Joan Berzoff|Lewis M. Cohen|Mark L. Unruh
Advance Care Planning
General Department of Preventive Medicine|Quality Research|Massachusetts General Hospital|Harvard University|Baystate Medical Center|Smith College|Baystate Medical Center|University of New Mexico
90000 patients esrd die annually united states yet advance care planning acp underutilized understanding patients families diverse needs strengthen systematic efforts improve acpindepth interviews conducted purposive sample patients familyfriends dialysis units two study sites applying grounded theory interviews audiotaped professionally transcribed analyzed iterative process emergent themes identified discussed organized major themes subthemesthirteen patients nine familyfriends participated interviews mean patient age 63 years sd 14 five patients women participants identified black n1 hispanic n4 native american n4 pacific islander n1 white n11 mixed n1 three major themes associated subthemes identified first theme prior experiences acp revealed discussions rarely occur yet patients desire potential role primary care physician broached second theme factors may affect perspectives acp included desire connection nephrologist positive negative experiences dialysis team disenfranchisement life experiences personality traits patientfamilyfriend relationships power differentials third theme recommendations discussing acp included thoughts lead discussions discussions take place discussed howmany participants desired better communication nephrologist andor dialysis team number expressed feelings disenfranchisement could negatively impact acp discussions diminished trust life experiences personality traits relationships family friends may affect patient perspectives regarding acp studys findings may inform clinical practice useful designing prospective intervention studies improve patient family experiences end life