The COVID-19 pandemic exposed cracks in a fragmented U.S. health care system, leading hospice and other health care providers to pursue improvement. Refocusing attention on quality, care coordination and the patient’s experience during serious illness or the end of life must be a critical driver, according to BJ Miller, M.D., author, hospice and palliative care specialist, and founder of Mettle Health.
More than 3.5 million lives have been lost worldwide to COVID-19, according to the World Health Organization. Nearly 600,000 of those deaths occured in the United States, the U.S. Centers Disease Control and Prevention reported.
Fragmentation in health care delivery is the systemic misalignment of incentives or lack of coordination leading to inefficient allocation of resources or harm to patients, adversely impacting quality, cost and patient outcomes, according to a 2008 Commonwealth Fund report in the American Journal of Managed Care. The systemic fragmentation in the United States is difficult to dislodge, steeped in the history and culture of medicine and embedded population-wide in the current system — operationally, financially and clinically, according to the Commonwealth Fund.
The fragmented health care system too often has become the source of pain and suffering in patients, Miller said at Hospice of Southern Maine’s annual Thresholds Conference.
“The health care system has great intentions, but we have to acknowledge that in so many ways, the system itself can become the source of the suffering,” Miller said. “No one has a lock on it, no one discipline, no one person. We all have an approach to it — hence the interdisciplinary team. We can change it. We might work towards something that functions a little bit better.”
One key area where U.S. health care can improve is care coordination, including communication between providers in different settings. Compared to physicians in other countries such as New Zealand, France and Norway, a substantial proportion of clinicians in the United States did not routinely receive necessary information in a timely manner from specialists, after-hours care centers, emergency departments, or hospitals, according to the 2019 Commonwealth Fund International Health Policy Survey published in Health Affairs.
The patient-centered, interdisciplinary hospice model could serve as an example to the health care system at large.
“People choosing hospice are generally opting to forgo efforts to prolong their life with a shift to put quality front and center,” said Fernando Moreno Jr., M.D., medical director at Hospice of Southern Maine. “The mission of hospice care is simple: Provide compassion, care and comfort through the end of life. Hospice care acknowledges that people are more than a sum of their medical conditions.”
Medical training and health care culture is designed to pursue cures of disease, often erring on the side of aggressive treatments until the patient is close to death. A rising number of health care stakeholders are calling for a move away from that perspective and closer to the mindset that most hospice providers have traditionally held: That patients have a right to choose how they wish to live with their illnesses and that their care should reflect those goals.
Hospice and palliative care providers have long placed an emphasis on improving patients’ quality of life. Restructuring the larger health care system around a similar model focused on goal-concordant care would improve the patient experience throughout the continuum, according to Miller, who stated that the focus needs to be on the person rather than the disease.
“So much of our consternation in our weird false divides between social and medical issues, etc., would all be obviated if we let the system fall down a little bit and be reconstituted around people rather than illness,” Miller said. “Our field of hospice and palliative medicine has been making this point quietly for a long time and that may be getting increasingly loud. Quality of life is the bigger prize.”