Advance Care Planning

Abstract

Background and objectives 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.Design, setting, participants, & measurements 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.

Caring for Older Patients on Peritoneal Dialysis at End of Life

“…A randomized controlled trial in an elderly general medical population has shown that advance care planning improves end-of-life care, patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives (16). A similar study has yet to be done BOX 2 -Timing of end-of-life discussions 1 in the dialysis population; yet patient interviews suggest that most participants felt that advance care planning is important and should start early in the disease course, but that it rarely takes place at all (17).…”

“Maybe They Don't Even Know That I Exist”: Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease

“…(25) This sentiment is echoed in more recent qualitative studies describing the experiences and perspectives of caregivers and family members of patients with advanced kidney disease as they pertain to specific treatments (e.g., hemodialysis, supportive care) (26)(27)(28)(29)(30)(31), advance care planning (ACP) (32), and end-of-life care (33)(34)(35). To our knowledge, no prior studies have attempted to characterize more broadly the experiences of family members and friends of patients with advanced kidney disease.…”

Advance Care Planning for Patients with Advanced CKD

“…Although nephrologists are integral members of the team in the advance care planning process, if they have done an effective job, advance care planning topics would have been introduced and discussed in most cases during the course of CKD management, long before dialysis was initiated. As again demonstrated by the participants in the study by Goff et al, dialysis patients believe that advance care planning should be started early in the course of CKD and revisited at intervals (6). Interestingly, Goff et al report that several of their patients had engaged in advance care planning discussions with their primary care physicians.…”

“…Goff et al suggest that patient experience with death or severe illness in a family member may facilitate advance care planning (6). A study of 43 in-center hemodialysis patients in the 1990s failed to show that experience with potentially life-threatening illness in the patient or a family member influenced completion of advance directives, a surrogate end point of successful advance care planning (3).…”

“…Patients believe that nephrologists should lead advance care planning discussions, but most dialysispatients report never engaging in such discussions with their nephrologists (1,3,6). In 2006, only 39% of surveyed American and Canadian nephrologists reported feeling very well prepared to make end-of-life decisions with patients (9).…”