title: Advance care planning among hematopoietic cell transplant patients and bereaved caregivers.
abstract: Younger, healthier patients contemplating high-risk (but potentially curative) hematopoietic cell transplants (HCT) may not consider advance care planning (ACP). We investigated the effect of pre transplant ACP in surviving HCT patients and bereaved caregivers using retrospective, audiotaped telephone surveys. Subjects were identified between 2001 and 2003 via databases at two high-volume HCT centers. Transcripts were coded by two investigators, with differences resolved by consensus. HCT survivors (n=18) were interviewed a median of 13 months after HCT for acute leukemia (7), lymphoma (5) or other (6); 50% had living wills, 72% had a formal proxy. Twelve (67%) had discussed mortality risk pre HCT with the medical team. Of those, 92% felt their hope and perception of the medical team's truthfulness was increased or unchanged (I/U) by the conversation, whereas all felt clinician commitment to transplant was I/U. Bereaved caregivers (n=11) were interviewed a median of 10 months post death (median 31 days post HCT, range 13-152). Nine (82%) had discussed mortality risk pre-HCT with the medical team; 7 (78%) felt hope was I/U, all felt clinician commitment to transplant and truthfulness was I/U, and most felt ACP reduced burden (67%). ACP discussions with patients and caregivers pre-HCT did not affect hope and supported confidence in medical teams.
authors: 1] Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA [2] Group Health Research Institute, Group Health Co-operative, Seattle, WA, USA.
authors: E T
authors: ET
authors: Loggers
authors: 1] Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA [2] Medical Oncology, University of Washington, Seattle, WA, USA.
authors: S
authors: S
authors: Lee
authors: Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA.
authors: K
authors: K
authors: Chilson
authors: Medical Oncology, University of Washington, Seattle, WA, USA.
authors: A L
authors: AL
authors: Back
authors: Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA.
authors: S
authors: S
authors: Block
authors: Division of Oncology/Hematology, University of Nebraska Medical Center, Omaha, NE, USA.
authors: F R
authors: FR
authors: Loberiza
mesh_terms: D000328:Adult; D032722:Advance Care Planning / Q000592:standards*; D000368:Aged; D017028:Caregivers; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D012189:Retrospective Studies; D017741:Survivors; D019172:Transplantation Conditioning / Q000523:psychology*