Less than one-third of patients get the end-of-life care that they expressly asked for, a study found.
To assess advance care planning activities before hospitalization and how it matched expressed preferences for care and documentation of those preferences in the medical record, researchers conducted a prospective study of elderly patients who were at high risk of dying in the next 6 months and their family members at 12 acute care hospitals in Canada from Sept. 1, 2011 to March 15, 2012.
Results appeared online April 1 in JAMA Internal Medicine.
Before hospitalization, 76.3% of patients had thought about end-of-life care: 11.9% preferred life-prolonging care; 47.9% of patients had an advance care plan, and 73.3% had formally named a surrogate decision maker.
Of patients who had discussed their wishes, 17.0% of patients and 18.2% of family members had discussed their preferences with a specialist physician, and only 30.3% of patients and 22.6% of family members had discussed their preferences with a family physician and 55.3% of patients and 62.7% of family members had discussed them with any member of the health care team.
Agreement between patients' end-of-life care and what was documented in the medical record was 30.2%. The area of greatest discordance was that 28.1% of patients (56 of 199) preferred comfort measures only, but this was documented in only 4.5% (9 of 199) of stated goals. Among family members, 34.6% (53 of 153) preferred that the patient receive comfort measures only, but this was documented in only 17.0% (26 of 153) of stated goals.
Researchers wrote, "Our results show that even when patients and families have thought about and expressed preferences for EOL (end of life) care before hospitalization, members of the health care team that is caring for the patient during the index hospitalization are not discussing them with the patient or family members and these preferences are not documented in the medical record."
An editorial took a harsher tone, calling this lack of documentation a medical error.
The editorial said, "As with all medical errors, there is likely a complex interplay of factors leading to this disconnect of documented patients' preferences, factors involving patients, families, clinicians, and the health care system. However, the study findings do suggest one possible factor: our current safety procedures and checklists have not yet overcome the reluctance of clinicians to ask difficult questions about treatment wishes when confronted with patients who are seriously or terminally ill."