End Of Life Care Modelling Tools are crucial for evaluating and improving the quality of care provided to dying patients and their families. A significant obstacle in enhancing end-of-life care is the scarcity of effective measurement tools that capture the experiences and perspectives of both patients and their families. The Toolkit of Instruments to Measure End of Life Care (TIME) addresses this gap by developing instruments that specifically incorporate these crucial viewpoints.
Developing a Family-Centered Model
To create a conceptual model for a retrospective survey of bereaved family members, researchers conducted a qualitative literature review of professional guidelines and held six focus groups with bereaved family members. The focus groups included 42 participants from various care settings: acute care hospitals, nursing homes, and hospice/VNA home health services. Participants were contacted 3-12 months after the patient’s death. This combined approach aimed to integrate both professional and family perspectives on what constitutes quality end-of-life care.
Defining Quality End-of-Life Care
Focus group participants identified five key domains that define high-quality medical care at the end of life:
- Physical Comfort: Ensuring the dying person’s physical comfort and managing pain effectively.
- Decision-Making Control: Empowering dying persons to make informed decisions about their medical care and daily routines.
- Family Burden Relief: Alleviating the pressure on family members to constantly advocate for their loved one’s needs.
- Family Education and Support: Providing family members with the knowledge and confidence to care for their loved ones at home.
- Emotional Support: Offering emotional support to family members both before and after the patient’s death. This includes bereavement support.
The literature review of professional guidelines largely aligned with these findings, with one notable exception: the guidelines did not address the significant burden families experience in advocating for their loved ones.
A New Tool for Measuring Quality
The combined insights from bereaved families and professional guidelines formed the basis for a new conceptual model of patient-focused, family-centered medical care. This model, in turn, informed the development of a novel survey tool designed to gather feedback from bereaved family members about their experiences with end-of-life care. This instrument allows for the incorporation of family perspectives in evaluating and improving the quality of care provided. By capturing the voices of those most intimately involved in the end-of-life journey, these tools offer valuable insights for enhancing care practices and ensuring a more compassionate and patient-centered approach. This new survey offers a valuable mechanism for incorporating the perspectives of bereaved family members in measuring the quality of end-of-life care.
