JAMA Oncology Finds Gaps in End-of-Life Care as CMS Proposes Rule Change for Advance Care Planning

Yesterday’s proposal from CMS to pay for advanced care planning comes as new research shows too few cancer patients are addressing end-of-life issues in a timely way, and the problem may be especially acute among teens and young adults.

A special issue of JAMA Oncology published today includes 5 articles of research and commentary on end-of-life care; authors found that while more patients have a durable power of attorney, advanced care planning is underused, often inadequate, and sometimes not followed by physicians.

Of note, a study in the issue that focused on adolescent and young adult cancer patients found that two-thirds of them received aggressive treatment near the end of life, although authors conceded they did not know whether patients desired such care.

CMS’ revived effort to pay physicians, nurses, or other professionals to counsel patients and families comes 5 years after an attempt to include this provision in the Affordable Care Act collapsed in controversy. Opponents accused the Obama Administration of creating “death panels,” and supporters of the ACA abandoned the issue to advance the rest of healthcare reform.

Since that time, the Institute of Medicine’s 2014 report, Dying in America, and other works have called for the nation to revisit advanced care planning. A disproportionate share of healthcare costs, especially in Medicare, come in the final months of life, despite surveys that show most Americans would prefer to die at home.

A sign of changing opinion came this April when former Florida Governor Jeb Bush, among the leading contenders for the Republican presidential nomination in 2016, not only supported advance care planning but said it should be a requirement for Medicare. This comes a decade after Bush’s controversial handling of the case of Terri Schiavo, a young woman who remained in a vegetative state for years after cardiac arrest because she had no advance directive in place.

Adolescents and Young Adults. The study published today, led by Jennifer Mack, MD, MPH, of Dana-Farber/Boston Children’s Cancer Center, examined claims records of 633 cancer patients aged 15 to 39 years who were enrolled in Kaiser Permanente Southern California. Researchers looked at 4 aggressive measures taken for patients with Stage IV or recurrence of cancer: intensive care, emergency room treatment, chemotherapy and hospitalization. A review of 111 of the patients found that death had been anticipated in 98% of the cases.

Young patients were twice as likely as Medicare patients, who must be at least 65 years old, to use intensive care or the emergency room in the last month of life. Less than 10% of older patients used these interventions, while 22% of the younger patients did.

Use of chemotherapy and hospitalization was about the same for both groups. Among younger patients 11% received chemotherapy in the last 2 weeks of life, and 62% were hospitalized in the final 30 days.

Mack, the lead author, said decisions about treating teens and young adults are challenging because they are at a different stage of life; some may have young children and want to extend life as long as possible.

“While use of aggressive measures might be an informed decision by young people who would do anything they could to live longer, some interventions come with a cost, which is poorer quality of life,” she said. “This study raises questions about what kind of care they’re getting and how we can get them the best quality of life at the end of life.”

Other Trends. A separate study led by Amol K. Narang, MD, studied a group of cancer patients who died between 2000 and 2012. Researchers found that there was an increase in the share of patients with a durable power of attorney, from 52% to 74%. However, this did not translate into an increase in the use of living wills, which fell from 49% to 40%, or an increase in end-of-life discussions, which also fell from 68% to 60% in the same period.

Meanwhile, reports from family members that patients received “all care possible” soared from 7% to 58%, while reports of patients dying in the hospital remained about the same, from 29% to 27%.

An editorial in JAMA Oncology from Charles R. Thomas Jr., MD, pointed to the need to find ways to promote talks between doctors and patients. “A communication gap apparently exists between patients and clinicians if the difficult conversations regarding preferred care toward the end of life are not taking place as they should,” he wrote.