When the Harvard Business Review (HBR) and the Journal of the American Medical Association (JAMA) both publish articles in the same week on virtually the same topic by two distinctive and veteran experts in the country, it becomes a must-read opportunity – for those within and outside healthcare.
The importance of focusing on the PATIENT’s goals of care directs provider attention to one of the most critical but overlooked challenges faced by families dealing with advanced illness. Both authors speak to our need to integrate personal “Goals of Care” as defined, experienced and articulated by the patient and family into the care planning process – not just as a component of shared decision making – but the driver of it. For those dealing with advanced chronic and progressive disease, patients’ values and preferences regarding independence, functional status and quality of life should be PRIMARY considerations in establishing the care plan. Sadly though, both experts shared how sorely lacking adequate resources, tools and metrics are to professionals in helping measure outcomes for this oft-over-medicalized legion of vulnerable patients.
Diane Meier, MD, director of the Center for the Advancement of Palliative Care, writing in HBR put it this way: that we should “start by asking patients and their families what matters to them, not focusing on the disease alone. We recognize that for patients with serious, progressive (usually chronic) conditions, as their illness evolves, what matters to them and their families also changes.”
In her HBR piece, entitled “Measuring Quality Care for the Sickest Patients,” she laments that we are not invested in the “the science of quality measurement…enough to measure what matters most to these patients,…because we don’t yet know how to allocate resources to achieve patients’ care-related goals.”
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.