A Call to Action: Advance Care Planning and End-of-Life Care in the United States

Caprio (CHS- 2012)Anthony J. Caprio, MD, CMD serves as the medical director and an Associate Professor for the Division of Aging, in the Department of Family Medicine for the Carolinas Healthcare System, Charlotte, North Carolina

 

The Institute of Medicine (IOM), a non-profit institution which provides objective analysis and recommendations to address problems related to medical care in the United States, issued the 2014 report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The IOM report proposed changes to U.S. policy and payment systems to increase access to palliative care services, improve quality of care, and improve patient and family satisfaction with care at the end of life.

The release of the IOM report was regarded by many U.S. healthcare professionals as a significant step forward in identifying gaps in the delivery of care for seriously ill and terminally ill patients. Specific recommendations were outlined as a “call to action” to improve end-of-life care. Hospice and palliative care physicians, in particular, rallied behind the report. Despite the enthusiasm among health care providers for this 500-page report and the wide dissemination of report summaries by various professional organizations, it is not clear if the general public understood or was even aware of the report.

Death is not a popular topic of discussion, especially for policy makers. However, the U.S. Centers for Medicare & Medicaid Services, in response to the IOM report, has proposed payments to physicians for advance care planning conversations starting in 2016. Since healthcare in the United States continues to be dominated by a fee-for-service model, it is understandable that physicians are more likely to “do what they get paid to do.” Although it is already feasible for physicians to be reimbursed for ACP discussions under certain provisions for counseling (time-based visits), the labeling of advance care planning as the primary focus of a clinical encounter is a major step forward in promoting patient-physician communication about end-of-life care, especially in primary care settings. This proposed payment is supported by the American Medical Association and other professional organizations. Interestingly, the public opinion for the proposed rule also seems to be overwhelmingly favorable. However, few Americans have actually spoken to their physician about end-of-life care.

This recent positive emphasis on ACP is in sharp contrast to its characterization in 2009 as akin to “death panels.” Perpetuated by political opponents of the Affordable Care Act (the 2010 U.S. federal statute which, in addition to other provisions, provided expanded health insurance coverage for Americans), this “death panel” rhetoric was an attempt to characterize ACP discussions between patients and physicians as a government-sponsored program that would selectively limit treatments for frail and vulnerable persons in order to save money. Although there was a plan to include ACP discussions during annual wellness (prevention) visits for Medicare recipients in the United States, that requirement was abandoned, largely due to political concerns about being perceived as rationing care.

The reemergence of ACP in policy and payment reform suggests that perhaps death is slightly more acceptable to talk about now. However, more discussions do not always translate to greater access or improved quality of end-of-life care. Hospice is one area of both great growth and significant care disparities in the United States. Since fewer than half of eligible patients use hospice care in the United States, and most only for a short period of time, another provision of the Affordable Care Act is a pilot program for the U.S. Medicare Hospice Benefit. Under existing U.S. Medicare payment rules, patients must forgo curative treatments in order to receive hospice services. In contrast, this pilot program allows patients to continue disease-directed (potentially curative) treatments in addition to receiving the supportive and palliative services offered by hospice agencies. This “concurrent” care model has already been implemented by a private health insurer, but now the federal Medicare program is testing this model. If successful, it could set the standard for other health insurers in the U.S. Originally, 30 hospice organizations were planned to participate in the Medicare pilot, but the program was expanded to 141 hospices due to high interest.

So what can we learn from all of this? First, that labeling is important. Labeling clinical encounters as ACP discussions and avoiding negative characterizations of end-of-life discussions as rationing care are important in promoting open communication between patients and their physicians. Redefining the supportive care provided by hospice as not reserved only for the imminently dying may help expand access to hospice services and increase referrals to hospice earlier in the disease trajectory.

Second, policy and payment changes have the potential to promote change in how and when we talk about death and dying. Routine ACP conversations in primary care practice and earlier access to hospice supportive services may make the journey at the end of life more patient and family centered. Certainly, policy and payment changes will not be sufficient to reduce the cultural hesitation to talk about death. The IOM report also recommends development of standards for clinician-patient communication and for professional and public education.

Finally, we will need patient and family-centered metrics to measure success and convincing evidence to support policy and payment changes. What are the minimal standards for clinician communication and how are physicians and other health care professionals trained and assessed? What are the standards for assessing the success of healthcare delivery systems and health care institutions which serve the seriously and terminally ill and support their families? We have to move beyond the IOM’s “call for action” to action.

 

This blog is one of a series from the 43rd North American Primary Care Research Group (NAPCRG) Annual Meeting, which runs from October 24-28, 2015, in Mexico. CMAJ is one of the sponsors of the meeting.

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