Nurses, but not family, found that quality of life program helped dying elderly patients

The Belgian study provided staff on acute geriatrics wards with a care guide for last days of life, training, supportive documentation, and a guide for implementation.


Care for dying elderly patients in the hospital may be improved by implementation of a program focusing on quality of life, but nurses are more likely to see improvement than patients' family members, according to a recent study.

Researchers in Belgium performed a cluster randomized controlled trial involving acute geriatrics wards at 10 hospitals from Oct. 1, 2012, to March 31, 2015. A random number generator assigned five hospitals to the intervention group and five to the control group. Hospitals in the intervention group began using the Care Programme for the Last Days of Life (CAREFuL), which included a care guide for last days of life, training, supportive documentation, and a guide for implementation, while hospitals in the control group provided usual care. The implementation guide involved nine components to be completed as well as a two-day training package intended to promote correct, compassionate use of the care guide, which was a document designed to guide health care staff in making choices when caring for dying patients.

Patients were included in the study if they (or their representative, in case of those unable to give informed consent) consented to use of their personal medical data, if they died on the wards during the study period, and if they had been hospitalized for more than 48 hours. The study's primary outcomes were comfort around dying, as measured by the End-of-Life in Dementia—Comfort Assessment in Dying (CAD-EOLD), where scores range from 14 to 42, and symptom management, as measured by the End-of-Life in Dementia—Symptom Management (SM-EOLD), where scores range from 0 to 27. Secondary outcomes were symptoms and care needs in patients' last three days of life as assessed by nurses using the Palliative Care Outcome Scale, where scores ranged from 0 to 40; family caregivers' satisfaction with care during the last 48 hours of life as assessed by the End-of-Life in Dementia—Satisfaction with Care scale; and symptom burden as assessed by nurses. All measures were completed by patients' nurses or family caretakers after the patients' deaths. Patients and families were blinded to intervention status, but hospital staff members were not. The study results were published online May 16 by The Lancet.

Overall, 118 patients in the control group and 164 patients in the intervention group had outcomes assessed in the postintervention period. In the intervention group, 132 patients (80%) were assessed by nurses and 48 (29%) were assessed by family caretakers, while in the control group, 109 patients (92%) were assessed by nurses and 23 (19%) were assessed by family caretakers. Patient comfort as assessed by nurses was significantly better in the intervention group versus the control group (baseline-adjusted mean difference in CAD-EOLD, 4.30; P<0.0001). However, no significant differences were noted in comfort as assessed by family caretakers (baseline-adjusted mean difference in CAD-EOLD, −0.62; P=0.82) or in symptom management as assessed by family caretakers (baseline-adjusted mean difference in SM-EOLD, −0.59; P=0.71) or by nurses (baseline-adjusted mean difference in SM-EOLD, −0.41; P=0.58). Nurses also noted significantly better symptoms and care needs in the intervention group, but satisfaction with care as assessed by family caregivers was significantly worse in the intervention group than in the control group.

The authors acknowledged that nurses were not blinded to study allocation and were aware that they were implementing the CAREFuL program. In addition, they noted that only 34% to 36% of patients gave consent to use their data in the trial and that not all patients were approached to participate in the study due to insufficient time, among other limitations. However, they concluded that CAREFuL led to significant improvements in nurse-assessed comfort around dying, symptoms, and care needs in patients' last days of life, although these benefits were not noted by patients' family members. While the positive results among nurses seem to support wider implementation of the program, further study of family members' and patients' perceptions are needed, they wrote.

The authors of an accompanying commentary noted concerns about the strengths of the study's findings due to the lack of blinding among the health care staff, the lack of information on the effect of the intervention on ward processes, and the low family response rate and level of satisfaction. They also pointed out that CAREFuL was based on an earlier program, the Liverpool Care Pathway for the Dying Patient (LCP), that ended in the United Kingdom in 2014 because both the public and the government were concerned about its implementation.

“The results of the CAREFuL study are welcome as an important step, but crucial questions remain unanswered about the study itself and the contextual and implementation issues that the experience with LCP revealed,” the commentary authors wrote. “We encourage future research—on both CAREFuL and other end-of-life pathways—to narrow the evidence gap we face in comforting patients dying in hospital and their families.”