"It is not the fault of the health care team - it is the way the system works": a mixed-methods quality improvement study of patients with advanced cancer and family members reveals challenges navigating a fragmented healthcare system and the administrative and financial burdens of care.

Abstract

Background: Healthcare fragmentation and lack of care coordination are longstanding problems in cancer care. This study's goal was to provide in-depth understanding of how the organization and fragmentation of healthcare impacts the experiences of patients with advanced cancer and their families, especially near the end-of-life.

Methods: This mixed-methods quality improvement study took place at a large multi-specialty healthcare organization in Northern California. Electronic health record data was used to identify patients with advanced cancer and their characteristics. Data were collected 10/2019-05/2022 through periodic patient surveys and in-depth interviews with sampled family members, including open-ended questions about overall healthcare experiences. Data were analyzed using inductive thematic analysis.

Results: Overall, 281/482 (58.3%) patients with advanced cancer completed surveys. Surveyed patients' mean age was 68 (SD: 12.8) years, 53% were male, 73% White, 14.2% Asian, 1.4% Black, 3.9% Other; 8.9% Hispanic, and 19.2% were deceased within 12 months. Twenty-four family members completed in-depth interviews: 17/24 (70.8%) were spouses, 62.5% were female and 50% were interviewed after the patient's death. Respondents were generally positive about health care team interactions, but consistently brought up the negative impacts of the organization of healthcare, "It is not the fault of the health care team - it is the way the system works." Three major challenges were identified. (1) Systemic healthcare care fragmentation, including difficulties navigating care across providers and institutions, "It seems like everything is like an isolated incident… there's no overall, big picture viewpoint." (2) Administrative burdens, "In the end I gave up [scheduling care] because I was tired of calling." (3) Financial burdens, "This oncologist wanted to put him on a drug…but it was $4000 a month." Respondents described these challenges leading to worse quality of care, health, and quality of life, and loss of trust in the national healthcare system.

Conclusions: These findings illustrate how care fragmentation and administrative and financial burdens lead to worse quality care and distrust of healthcare. Better coordination of patient-centered care, and a fundamental restructuring of a highly fragmented national healthcare system are required to meet the needs of patients with complex conditions like advanced cancer and their families.