Patient-Focused, Family-Centered End-of-Life Medical Care

Abstract

A fundamental barrier to improving the quality of medical care at the end of life is the lack of measurement tools. The Toolkit of Instruments to Measure End of Life Care (TIME) aims to fill that void by creating measurement tools that capture the patient and family perspective. To develop a conceptual model for a retrospective survey of bereaved family members that incorporates both professional and family perspectives on what constitutes good care at the end of life, a qualitative literature review of existing professional guidelines and six focus groups with bereaved family members from acute care hospitals (n = 2), nursing homes (n = 2), and hospice/VNA home health services (n = 2) was performed. The focus groups were held in Arizona, New York, and Massachusetts and included 42 bereaved family members/friends contacted 3-12 months from the time of patient's death. Domains of care that define quality end-of-life care were defined. Focus group participants defined high quality medical care as: 1) providing dying persons with desired physical comfort; 2) helping dying persons control decisions about medical care and daily routines; 3) relieving family members of the burden of being present at all times to advocate for their loved one; 4) educating family members so they felt confident to care for their loved ones at home; and 5) providing family members with emotional support both before and after the patient's death. The qualitative literature review yielded similar results, except that the professional guidelines did not mention the advocacy burden felt by families. These two sources provided the foundation for a conceptual model of patient-focused, family-centered medical care and a new tool for surveying bereaved family members. Views of bereaved family members' stories and professional guidelines help to identify key domains of quality of end-of-life care. A new survey instrument provides a way to incorporate the perspectives of bereaved family members in measuring the quality of end-of-life care.

Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter?

“…Domains of patient-focused, family-centred care identified through the work of Teno et al [17] were assessed in relation to the location where the majority of care occurred in the last 30 days of life. Six patient-focused, family-centred care domains elicited by the survey were created: 1) provision of desired physical comfort (pain, dyspnea) and emotional support (3 single items), 2) promotion of shared decision making (3 items), 3) treatment of the dying with respect (1 item), 4) attention to the needs of the family(caregivers) for information and knowing what to expect while the decedent was dying (2 composite scores: 3 items each), 5) attention to the needs of the family (caregivers) for emotional and spiritual support (7 items) and, 6) provision of coordination of care across care settings and health care providers (1 item).…”

“…Thus the goal of our study was to provide a population-based description of care provided to adults who died in Nova Scotia during the last 30 days of life as perceived by knowledgeable bereaved family members or informal caregivers (informant) shortly after death. In this article our objective is to describe the results of our survey process and to examine the relationship between the location where the decedent received the majority of care during their last 30 days of life and the informant’s perception of the extent of unmet need experienced, as defined by multiple domains of patient-focused, family-centred care [10,17], before and after adjustments for potentially confounding factors.…”

The effectiveness of the Liverpool care pathway in improving end of life care for dying cancer patients in hospital. A cluster randomised trial

“…The quality of end-of-life care will be assessed using the Global Scale of the Italian version of the Toolkit "After-death Bereaved Family Member Interview " [19,20]. The Toolkit is a semi-structured interview with the nonprofessional caregiver closest to the dying patient during the last days of life in hospital.…”

Family Caregiving and the Site of Care: Four Narratives About End-of-Life Care for Individuals with Dementia

“…Having music available, gentle lighting, and pleasant views to the outside make both patients and family members feel better. Consideration should be given to adding the role of the environment to earlier models such as the patient-and family-centered perspective as outlined by Teno and associates (Teno, 2000;Teno, Casey, Welch, & Edgman-Levitan, 2001;Teno et al, 2011).…”