Goals of Care: Driver of Shared Decision Making

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. 

Missing Metrics

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.” Mind you now, the U.S. spends multiple times over what other developed counties do on health care, but it seems our investments are directed at highly technical and invasive therapies rather than those that are more palliative in nature and socially responsive – for a group of folks who can gain little from attempts at rescue medicine and aggressive measures.

Dr. Joanne Lynn’s Viewpoint piece in JAMA, entitled “Value-based Payments Require Valuing What Matters Most to Patients” describes her position as follows: Paying for value “requires measuring what actually matters to patients.” She continued, stating that almost all current quality metrics reflect professional standards, which is a good thing, but called out the shortcomings of professional standards for those living with “serious, life-altering, and ultimately life-ending chronic conditions because traditional professional standards may not effectively address what an individual most wants.”

Call to Action for Consumers and Families

Both Lynn and Meier propose a series of “shoulds” that clinicians, researchers, systems and payers ought to be considering to address the structural deficiencies and quality measures our most fragile patients need. I applaud them both for their insightful prescriptions and tactical  recommendations. Professionals of all disciplines should heed their wise counsel. 

My focus, however, remains a bit more patient directed. It is time for us as consumers and family members to take our “shared decision making” obligations more seriously and begin engaging in the kinds of conversations that will assist those clinicians in clearly understanding what kinds of goals they should be matching with those “patient preferences.” 

Get hold of a Caring Conversations® workbook, flip through our Conversations starter booklet®. We, as patients and families, have to do our part in reducing the burden of providers in feeling their way about what we want most. This is our job as much as it is theirs, and we owe it our loved ones to clearly articulate the values that point to the right set of goals that should be adopted, measured and achieved.


John G. Carney is the president and CEO of the Center for Practical Bioethics. In 2008 he served as one of the co-authors in a Report to Congress on Advance Care Planning.