title: Advance care planning: a qualitative study of dialysis patients and families.
abstract: OBJECTIVE
  More than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP.
  
  
  METHODS
  In-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites. Applying grounded theory, interviews were audiotaped, professionally transcribed, and analyzed in an iterative process. Emergent themes were identified, discussed, and organized into major themes and subthemes.
  
  
  RESULTS
  Thirteen patients and nine family/friends participated in interviews. The mean patient age was 63 years (SD 14) and five patients were women. Participants identified as black (n=1), Hispanic (n=4), Native American (n=4), Pacific Islander (n=1), white (n=11), and mixed (n=1). Three major themes with associated subthemes were identified. The first theme, "Prior experiences with ACP," revealed that these discussions rarely occur, yet most patients desire them. A potential role for the primary care physician was broached. The second theme, "Factors that may affect perspectives on ACP," included a desire for more of a connection with the nephrologist, positive and negative experiences with the dialysis team, disenfranchisement, life experiences, personality traits, patient-family/friend relationships, and power differentials. The third theme, "Recommendations for discussing ACP," included thoughts on who should lead discussions, where and when discussions should take place, what should be discussed and how.
  
  
  CONCLUSIONS
  Many participants desired better communication with their nephrologist and/or their dialysis team. A number expressed feelings of disenfranchisement that could negatively impact ACP discussions through diminished trust. Life experiences, personality traits, and relationships with family and friends may affect patient perspectives regarding ACP. This study's findings may inform clinical practice and will be useful in designing prospective intervention studies to improve patient and family experiences at the end of life.
authors: Divisions of General Medicine and Center for Quality of Care Research, and Sarah.goffmd@baystatehealth.org.
authors: Sarah L
authors: SL
authors: Goff
authors: Division of Nephrology, Department of Internal Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts;
authors: Nwamaka D
authors: ND
authors: Eneanya
authors: Department of Psychiatry, Baystate Medical Center, Springfield, Massachusetts;
authors: Rebecca
authors: R
authors: Feinberg
authors: Nephrology, Department of Internal Medicine.
authors: Michael J
authors: MJ
authors: Germain
authors: Divisions of Geriatrics and Palliative Medicine and.
authors: Lisa
authors: L
authors: Marr
authors: Smith College School for Social Work, Smith College, Northampton, Massachusetts.
authors: Joan
authors: J
authors: Berzoff
authors: Department of Psychiatry, Baystate Medical Center, Springfield, Massachusetts;
authors: Lewis M
authors: LM
authors: Cohen
authors: Nephrology, Department of Internal Medicine, University of New Mexico, Albuquerque, New Mexico; and.
authors: Mark
authors: M
authors: Unruh
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D003142:Communication; D005190:Family; D005260:Female; D033062:Friends; D006801:Humans; D007407:Interviews as Topic; D007676:Kidney Failure, Chronic / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D017060:Patient Satisfaction; D010551:Personality; D010819:Physician's Role; D010817:Physician-Patient Relations; D011320:Primary Health Care; D036301:Qualitative Research; D006435:Renal Dialysis
keywords: ESRD; dialysis; dialysis withholding