According to researchers, most elderly patients prefer only comfort measures at the end of life (EOL); however, clinicians are increasingly using life-sustaining technologies in a patient’s final stages. Whereas most people express a desire to die at home, in the Western world, dying usually takes place in a hospital. Further, one fifth of hospital deaths occur in an intensive care unit.
Patients can engage in advance care planning (ACP), an ongoing process that allows a person with decision-making capacity to establish preferences for future healthcare decisions. The process should involve discussions with healthcare providers, family members, and close friends. The ACP process can result in a verbal or written advance plan that may include instructions about medical treatments wanted or not wanted at the EOL. It may also include the identification of a surrogate decision maker.
ACP has been shown to improve quality of life during the terminal phase of life and outcomes for family caregivers, as well as reduce the use of resource-intensive care at the EOL. Noting that there is a lack of evaluation of the value of ACP from the patient or family perspective, researchers recently conducted a prospective study at 12 acute care hospitals in Canada to determine the prevalence of ACP and its components prior to index hospitalization and the agreement between patients’ expressed preferences and the prescribed levels of care as documented in medical records.
The study also examined patients’ and family members’ overall satisfaction with EOL communication and decision-making during the last 4 weeks of life. Study results were reported in JAMA Internal Medicine [2013;173(9):778-786].
Study participants were elderly patients at high risk of dying in the next 6 months and their family members. The researchers approached 513 eligible patients and 366 potentially eligible family members between September 1, 2011, and March 15, 2012. Of those, 278 patients and 255 family members agreed to participate in the study.
For 95 of the 225 family members, the corresponding patient also participated. For 130 family members, the patient did not participate, usually due to severity of illness. Interviews occurred, on average, 3 days after the index admission. Mean patient age was 80 years and 37.1% lived alone. Mean age of family members was 60.8 years and 56.3% were children of the patient. Most patients and family members were white and spoke either English or French.
Prior to hospitalization, 76.3% of participating patients and family members had thought about future care for themselves or a loved one; of those, 88.7% of patients and 88.1% of family members had discussed the preferences with someone (most with another family member).
Comfort care only was preferred by 30.6% of patients and 30.6% preferred a combination of comfort care and full medical care not including resuscitation. Only 11.9% of patients preferred life-prolonging medical care, including resuscitation, in the event of deterioration in their health. Family members more commonly preferred comfort care for the patient (34.8%) or a mix of comfort care and full medical care not including resuscitation (27.7%); only 14.7% preferred aggressive medical care including resuscitation.
Of the 276 patients who expressed a preference for care, 27.9% (n=77) did not have a written order in their record stating the goal of care. Of the 224 family members who expressed a preference of care for the patient, 31.7% (n=71) of patient records did not have a written order stating the goal of care.