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Lendon JP, Ahluwalia SC, Walling AM, et al. Measuring experience with end-of-life care: A systematic literature review Journal of Pain and Symptom Management. 2015 May;49(5):904–915.
How is family and informal caregiver satisfaction with end-of-life care currently being measured?
Policymakers are increasingly interested in measuring patient, family and informal caregiver satisfaction, all of which have started to become linked to the way healthcare resources are spent.
Asking patients about their satisfaction with end-of-life care is challenging since some are too ill to respond, which often leaves family members or caregivers the only ones available to respond.
There is currently no standard for measuring satisfaction with end-of-life care, and there is variation in the types of questions asked, the responders, and the time and location of the surveys.
Evaluating the characteristics of existing approaches to asking about end-of-life care can help identify the criteria and challenges that should be considered when developing a standard approach.
A number of electronic searches were conducted for studies published from 1990 to June 2012, and those that discussed surveys measuring patient, family member, or informal caregiver satisfaction and experience with end-of-life care were included.
A total of 2094 unique studies were identified in searches, and 88 studies containing 51 unique surveys were included in the review after assessments for eligibility.
This review was funded by the Centers for Medicare and Medicaid Services, Department of Health and Human Services.
Patients are frequently asked about satisfaction with communication with healthcare professionals, treatments, symptom management, and overall experience.
Other important factors, such as patient and caregiver financial support, how comfortable the physical healthcare environment was, and caregiver support after patient death, were rarely assessed in surveys.
There was no uniform method of identifying which family member or caregiver should be questioned, when they should be questioned, or where they are questioned. Future research is needed to develop optimal guidelines for these procedures.
Questioning patients and caregivers about their satisfaction with end-of-life care often focuses on satisfaction with healthcare professional communication, and treatment and symptom management, but not on other important factors. There is no common procedure for identifying who is questioned, or when or where they are questioned, and further research is needed to identify optimal guidelines for these procedures.
This summary is based on a review that was determined to be of medium methodological quality based on an assessment using the AMSTAR tool.